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Is doing "more with less" in dementia becoming "a lot more with virtually nothing"?

The “doing more with less” mantra of course very popular as a solution to the impending doom of having to treat the old fatties with a burgeoning technology budget. Re-engineering the health system has become a hobby of thinktankers, in the best spirit of the blind watchmaker. But policy wonks are still unable to escape from the fact that the NHS is not a widget factory. The management school of Frederick Taylor is totally unfit for purpose in considering outcomes rather than outputs. As national policy moves steathily towards promoting wellbeing, particularly in long term conditions, the question becomes, “what is a good outcome for a person with dementia?” Econometrics, and people in big corporates, will immediately point to costs, such as the financial cost of ‘unplanned admissions’. However, the “tide is turning” on all that. People are becoming interested in empowering people with dementia to lead fulfilling lives, building on what they can do. It is however inherently undermined by people wishing to abuse the system, such as large companies returning massive shareholder value and paying their staff pittance on zero-hours contracts. Everyone also knows the system only can survive through the large army of unpaid family caregivers.

At a time when Don Berwick was in fact Donald M Berwick president of the “Institute for Healthcare Improvement”, before he became ‘even more famous’, he published, “Measuring NHS productivity: How much health for the pound, not how many events for the pound” in the BMJ on Saturday 30 April 2005. Berwick reported that the ONS had recently concluded that NHS productivity had declined by 3-8% (depending on the method of calculation) between 1995 and 2003. This had led Berwick cheekily to ask, and most pertinently to ask, ““Production of what?” is the key question here. If we ask the wrong question the answer may lead us to the wrong policy conclusion.”

Berwick noticed that the method used thus far was fundamentally flawed.

“it does not assess improvement in the mix of these so called outputs, such as when innovations in care allow patients to be treated successfully in outpatient settings rather than in the hospital. To its credit, the ONS notes carefully that “the output estimates do not capture quality change.” Its interpreters need to show equal caution.”

Berwick concluded,

“The people of the UK should be not asking, “How many events for the pound?” but rather, “How much health for the pound?” At least, that is what they should ask if they desire an NHS that can keep them healthy and safe at an affordable price for as long as is feasible.”

Wind on five years, and John Appleby, Chris Ham, Candace Imison  and Mark Jennings gave birth to “Improving NHS productivity: More with the same not more of the same” from the King’s Fund on 21st July 2010. You can view it from here, if you wish. Efficiency, in true Frederick Taylor, was the name of the game again.

“As the evidence brought together here shows, there is huge scope for using existing expenditure more efficiently, in relation to both support and back-office costs, and particularly variations in clinical practice and redesigning care pathways. It should be noted that the actual sums identified as potential savings may have already been partly achieved by the programmes listed, and so the figures should be interpreted as an indication of the scale of potential savings rather than an absolute figure.”

Of course, the language of efficiency is totally laughable in the private sector with finding profit in repeated work and unnecessarily transactions. As the NHS lives in denial that its budget is not being squeezed, as £20bn is returned to the Treasury from “efficiency savings”, pursuing efficiency has been ‘a means to an end’, and, together with the zest for austerity, perpetuates the notion that NHS needs to dramatically cut budgets, reduce  systematically services for patients and sack staff.

In his 2008/9 Annual Report, Sir David Nicholson prepared the NHS to plan ‘on the assumption that we will need to release unprecedented levels of efficiency savings between 2011 and 2014 – between £15 billion and £20 billion across the service over the three years’. These figures were based on analysis by the Department of Health, which assumed zero real growth from 2011/12 to 2013/14 in actual funding for the NHS in England. Given the state of the handling of the economy by the current Government, this was in fact quite a good assumption. It set this against spending that would be required to meet – as Nicholson reported (Health Select Committee 2010) – demographic changes, upward trends in historic demand for care, additional costs of guidance from NICE, changes in workforce and pay, and the costs of implementing government a £2.4bn non-“top down reorganisation” policy. Hence, the resultant ‘gap’ between actual and required funding of between £15 billion and £20 billion by 2013/14. Talking optimistically that is..

For dementia, there are other factors at play. With unified integrated budgets, or “whole person care”, it might be difficult to identify where the cutbacks are, as the figures merge into a morasse of confusion. Slimming the State might give a blank cheque under such a construct completely to annihilate social care. And against this background “self-care” – helping patients to better manage their own condition – has been promoted as being effective in reducing emergency admissions, including the use of care planning. At worst, “self care” is a figment of the Big Society which is a turkey which never flew.

So in that report from the Kings Fund various leadership and management devices are identified in relation to a productivity squeeze, of relevance to “the funding gap”:

Productivity

A practical example of the benefits of integration along the pathway of care can be seen in Torbay, where health and social care integration has had a measurable impact on the use of hospitals.  Torbay has established five integrated health and social care teams for older people, organised in localities aligned with general practices. Health and social care co-ordinators liaise with users and families and with other members of the team in arranging the care and support that is needed. Budgets are pooled and can be used by team members to commission whatever care is needed.

And – if productivity for dementia is extremely difficult to quantify, especially if you’re doing “more with less”, what about the general economy? According to NEF, recent estimates of productivity have told a familiar story: output per hour worked fell by 0.3% over the middle part of 2013. This means whatever economic growth occurred over the last year was not the result of people working better, or more efficiently. It was the result of an increase in the total number of hours worked. Productivity, over the whole year, barely improved. Roll over Taylor.

Labour productivity, the amount of economic output each worker generates per hour, fell sharply in the recession and has remained very weak. Employers hung on to workers when output fell and hired more people when the economy was stagnant. Productivity levels have remained relatively unchanged since the beginning of 2008. The difference between this and the three previous recessions is stark. And that is “the productivity puzzle”. ONS research has concluded that there is no single factor that provides an explanation, but identifies several that may have contributed.

Of particular scrutiny from economists has been something which has been enigmatically called “the changing nature of the workforce”. Firms have less need to fire people if pay rises are modest or if they are willing to work fewer hours. It is called “labour hoarding”, where employers hang on to more workers than they need in a downturn, so that when there is a recovery they can respond quickly, without incurring the costs of hiring and training new people. In a paper published published by the Institute for Fiscal Studies, researchers found many factors affecting productivity. They foud little evidence that the overall fall has been caused by labour hoarding, the demise of financial services or changes in workforce composition. Instead, we conclude that the key contributing factors are likely to be low real wages, low business investment and a misallocation of capital. But there’s always been one particularly attractive theory: “flexible” labour markets have been proved to be very effective in delivering part-time and temporary work, at low cost to employers. This is where market forces can lead to exploitation.

A “zero-hour contract” is a contract of employment used in the UK which, while meeting the terms of the Employment Rights Act 1996 by providing a written statement of the terms and conditions of employment, contains provisions which create an ‘on call’ arrangement between employer and employee. It does not oblige the employer to provide work for the employee.The employee agrees to be available for work as and when required, so that no particular number of hours or times of work are specified. The employee is expected to be on call and receives compensation only for hours worked.   And they are popular – one survey suggests that up to 5.5m people are now working on a zero hours basis. Meanwhile, underemployment – those who would like to work more hours, but cannot – is at record levels. When faced with collapsing markets in the recession, employers – rather than reducing the number of people in work – effectively cut wages and hours of those working.

Doesn’t this sound perfect for addressing the NHS funding gap in dementia?

Reviewed by Roger Kline, several reports have made clear that recent changes in employment practices are undermining safe and effective care outside hospitals. In particular, according to Skills for Care, 307,000 social care workers are now employed on zero-hours contracts under which staff have no guaranteed hours (or income) and travel time is unpaid. This accounts for one in five of all professionals in this sector and the numbers are growing rapidly. Also, it is argued that  “personalisation” has led to a growth of a section of the homecare workforce with virtually no employment rights at all – often on quasi self-employed terms – as well as raising serious questions about support, quality, training and supervision. All parties have been keen to pursue personal health budgets. It may be a coincidence that all parties agree on the need for the “efficiency savings”.

So the parties are largely singing from the same hymn sheet, and it is hard to know whether the think tanks have led to a discussion which airbrushes zero-hours contracts and unpaid family caregivers in dementia. In discussions of integrated care from think tanks, albeit in various guises such as “Making best use of the Better Care Fund” from the King’s Fund or “Whole person care” from the Fabian Society, there is a distinct unease about talking about the army of unpaid family caregivers, without whom many agree the care system would collapse, or those low-paid carers on zero-hours contracts. Converging evidence from the macroscopic picture of our economy, in the form of the ‘productivity puzzle’, and the landscape of social care for dementia paints in fact quite a grim picture of legitimising a solution to “the funding gap”.

This solution implemented has not in fact “doing more with less”. It’s been “doing a lot with virtually nothing”. And whatever your precise definition of ‘productivity’ for these workers, it is clear that many are at breaking point themselves under consider psychological and financial pressures themselves. Shame on no-one for discussing this with the general public.

Exploitation of carers should not be the solution for solving “the funding gap”.

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Twitter's telling me some of you have received my book at last!

Thanks to Rhona Light (“@Hippiepig“) for giving me feedback on my book. She was the very first to receive it.

FRONT COVER

Rhona’s copy of her book arrived yesterday.

Thanks also to @KateSwaffer for her supportive comments about my book.

And Rose got it too (@RoseHarwood1):

If you buy the book off Amazon, please remember not to buy it directly from them or you could be waiting 9-11 days. Here’s the link to the book on Amazon. I bought it today from “The Book Depository” as my complimentary copies hadn’t arrived. But I know it’s selling well. Yesterday it reached #3 in the UK. No3 And I was honoured to receive this tweet from Prof Simon Wessely, who is at the Maudsley/Institute of Psychiatry, and President-Elect of the Royal College of Psychiatrists.

I’ll be presenting the book to 25 guests in private in Camden on Saturday 15th February 2014. This includes of course Charmaine Hardy whose poppy is on the front cover:

Thanks a lot to Pippa Kelly too (@piponthecommons)

And I look forward to going out for dinner with them in the evening in Holborn.

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Is the drug industry "stopping dementia in its tracks" or in actual fact "running out of steam"?

Sometimes you have to trust people to get on with things.

That’s why headlines saying fracking under homes could go ahead without permission don’t help.

And the reported assimilation of ‘caredata’ into the NHS information “borg”, without clear valid consent, is running into problems.

We cannot sign off every single decision about how each £ is spent in the ‘fight against dementia’ as it’s called. But the issues about care vs cure in dementia is running into the same problems with imbalance in information as fracking and care data. This threatens seriously to undermine trust in policy leaders supposedly working on behalf of us in tackling dementia.

The origins of the phrase “stopping dementia in its tracks” are obscure. Stopping something in its tracks may be somehow related to the phrase “running out of steam” for nineteenth century railway trains “running out of steam”, or coming to a sudden end when travelling. Is the drug industry “stopping dementia in its tracks” or in actual fact “running out of steam”?

To stop something in its tracks, nonetheless, is a popular metaphor, as it tags along with the combattive ‘war’ and ‘fight’ against dementia theme.

Tracks

While there’s been a need to focus on bringing value to lives with dementia, much of the fundraising has involved painfully pointing out the costs. A study conducted by RAND Corp. for the federal government earlier in 2013 found that nearly 15% of people ages 71 or older, or about 3.8 million people, now have dementia. Each case costs $41,000 to $56,000 a year, the study found. By comparison, direct expenses in the same year for heart disease were $102 billion. The study also tried to get a handle on the cost of informal care, which is often provided by family members in their homes. It pegged that cost at a range of $50 billion to $106 billion a year.

In a press release dated 24 January 2014, the Alzheimer’s Society and Alzheimer’s Drug Discovery Foundation (ADDF) are reported in their “Drug Discovery Programme” as offering up to $1.5 million to new research projects which could speed up developing treatments for Alzheimer’s disease (AD) and dementia. It is hoped that international collaboration could help make the hope of finding effective dementia treatments within the next ten years a reality. This call is open for research looking at all forms of dementia including Alzheimer’s disease. This international call for research proposals comes just weeks after the G8 Dementia Summit in London called for more global collaboration in dementia research in order to develop effective treatments by 2025.

It is described in this promotional video as “halting dementia in its tracks”. To “halt something in its tracks” literally means “stop (dead) in something tracks to suddenly it stop moving or doing something”.

A previous research grant from the Alzheimer’s Society looked at fruit flies. It was for Dr Onyinkan Sofola at University College London for £208,277. It started on October 2007 and was completed on September 2010. The researchers developed a fruit-fly model of Alzheimer’s disease where the flies accumulated amyloid, and investigated the involvement of “GSK-3” on the behaviour of the flies. It was hoped that dialing down GSK-3 in healthy flies also did no harm suggesting this approach could work as a safe therapy for Alzheimer’s disease in humans.

Ahead of the G8 Dementia Summit in London last year (11 December 2013), Professor Simon Lovestone, Institute of Psychiatry, but soon to be at Oxford, set out what he hopes the Summit will achieve, the challenges of developing new therapies for dementia, and the real possibilities of one day preventing this devastating disease. The Summit was supposed to bring together Health Ministers from across the G8, the private sector and key international institutions to advance thinking on dementia research and identify opportunities for more international collaboration, with the ultimate aim of improving life and care for people with dementia and their families.

The G8dementia summit was described as a response thus by the BBC website:

BBC

Drugs currently used to treat Alzheimer’s Disease have limited therapeutic value and do not affect the main neuropathological hallmarks of the disease, i.e., senile plaques and neurofibrillar tangles. Senile plaques are mainly formed of beta-amyloid (Abeta), a 42-aminoacid peptide. Neurofibrillar tangles are composed of paired helical filaments of hyperphosphorylated tau protein.

New, potentially disease-modifying, therapeutic approaches are targeting Abeta and tau protein. Drugs directed against Abeta include active and passive immunisation, that have been found to accelerate Abeta clearance from the brain. The most developmentally advanced monoclonal antibody directly targeting Abeta is bapineuzumab, now being studied in a large Phase III clinical trial.

In the 1980s, the amyloid cascade hypothesis emerged, and it was the most long considered theory. It is based on the β-amyloid overproduction as responsible for the senile plaque formation and for the neurotoxicity that leads to the progressive neuronal death. However, controversial data about if β-amyloid is the cause of the disease or one of the main risk factors for AD are reported.

A further postulated theory at the end of the past century was the tau-based hypothesis. It is based on aberrant tau protein, a microtubule-associated protein that stabilizes the neuronal cytoskeleton, as the origin of Alzheimer’s pathology. There have been two phase IIb clinical trials with two different compounds, tideglusib and methylene blue. Both compounds have reported some positive results in the increase of cognitive level of AD patients after the first treatments on phase IIa clinical trials.

In the meanwhile, intensive research on the physiology and pathology of tau protein leads to the discovery of two kinases responsible for its posttranslational aberrant modifications. After cloning, these kinases were identified more than ten years ago, including the now well-known glycogen synthase kinase 3 (GSK-3).

The excitement of this “GSK3 hypothesis of Alzheimer’s disease” is described here in this paper with Professor Simon Lovestone as last author.

But all may not be as well as it first appears.

GSK-3 inhibition may be associated with significant mechanism-based toxicities, potentially ranging from hypoglycemia to promoting tumour growth. But encouragingly, at therapeutic doses, lithium is estimated to inhibit approximately a 25% of total GSK-3 activity, and this inhibition degree has not been associated with hypoglycemia, increased levels of tumorigenesis, or deaths from cancer. Currently it’s hoped, in pathological conditions, the GSK-3 inhibitor would be able to decrease the upregulation of the enzyme and, in the case that this treatment would slow down the GSK-3 physiological levels, other compensatory mechanisms of action would play the restorative function.

Therapeutic approaches directed against tau protein include inhibitors of glycogen synthase kinase- 3 (GSK-3), the enzyme responsible for tau phosphorylation and tau protein aggregation inhibitors. NP-12, a promising GSK-3 inhibitor, is being tested in a Phase II study, and methylthioninium chloride, a tau protein aggregation inhibitor, has given initial encouraging results in a 50-week study.  Fingers crossed.

Another important challenge for a GSK-3 inhibitor as an AD treatment is its specific brain distribution. The drug needs to cross the blood-brain barrier to exert its action in the regulation of exacerbated GSK-3 brain levels. Usually this is not an easy task for any kind of drug, moreover when oral bioavailability is the preferred administration route for chronic dementia treatment.

And once it gets into the brain, it has to to go to the right parts where GSK-3 needs to be targeted, not absolutely everywhere, it can be argued.

Nonetheless, the enthusiasm about the approach of drug treatments is described on Prof Simon Lovestone’s page for the Alzheimer’s Society.

However, Professor Lovestone’s research group has run into problems when trying to demonstrate their findings in mice, an important step in the research process. The problem is that mice do not naturally develop Alzheimer’s disease, and it is even difficult to experimentally cause Alzheimer’s disease in mice.

We may soon have to face up to the concept, with the current NHS having to do ‘more with less’, and ‘with no money left’, ‘we can’t go on like this’. It would be incredibly wonderful if you could give an individual a medication which could literally ‘stop dementia in its tracks’. But even note the scientific research above is for Alzheimer’s disease, one of the hundred causes of dementia, albeit the most common one. Or we may have to stop this relentless spend on finding the “magic bullet” in its tracks, and think about practical ways of enhancing the quality of life or wellbeing of those currently living with dementia. Nobody reasonable wishes to snuff out hope for prevention or cure of the dementias, but, for a moral debate, the facts have to be on the table and clear. Every money we spend on investigating magic bullets which don’t work could have been spent in giving a person living with dementia adequate signage for his environment, or a ‘memory phone’ with photographs of common contacts. But the drug industry, and the people who work with them, never wish to admit they’re running out of steam.

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Is it "ageist" to suggest 'downsizing' to promote wellbeing in older people with dementia living independently?

housing 2

You can currently view the dementia debate in the House of Lords from 22 January 2014 here:

http://www.bbc.co.uk/democracylive/house-of-lords-25848095

The whole of this debate was extremely interesting, but one particularly societal housing issue was raised amidst the discussions.

One argument is that many of us are living in accommodation unsuitable for our needs anyway.

Lord Best, a Cross-Bench peer, introduced the notion of ‘downsizing’ in housing for older residents including people living with dementia, to improve their wellbeing:

“The Hanover@50 website displays the input from nine national think tanks on questions of housing and care for older people. In summarising these contributions to the debate that Hanover organised to mark its 50th anniversary, I contributed a 10th chapter, called, “Accommodating our extended middle age”. This addresses two of the most significant problems facing the UK: first, the escalating health and social care requirements for those in later life and, secondly, the acute shortages of homes for younger households. The proposed solution to both problems is to build attractive, well designed homes for those in their extended middle age—55 to 75 years-old—and create a sea change in attitudes in the UK to downsizing or “right sizing”.

If even a modest proportion of the rapidly growing number of older, single people and couples living in family homes could be enticed—by spacious, light, energy-efficient new homes—to downsize, there would be huge gains for them and for the nation: improved health and well-being for movers; liberation from looking after bigger homes and gardens; reduced accidents in the home or illnesses linked to cold or damp; and pre-empting, postponing and preventing loss of independence and enforced moves into expensive residential care in later life.

Downsizing retirees can access wealth by releasing equity, and this can pay for care, assist the next generation or simply fund happier retirement. Standards of living can be dramatically improved, and the setting of “sociable housing” for those in extended middle age can reduce the likelihood of loneliness and isolation, which are the chief causes of misery and mental health problems for older people.”

Most discussion about kick-starting housing focuses on first-time buyers. But local authorities, arguably, could do much more to help older people live in homes that are suitable for their needs later in life

As an ageing society – where buying a first home has been a rite of passage for decades – we tend not to discuss openly or explicitly about what kind of housing people need as they get older.

This should encourage an approach of solidarity, collaboration, cooperation and reciprocity. It’s also, potentially, a question about fundamentally pooling resources.

Housing quality and choice are key to a successful ageing society: good housing allows easier care delivery and often represents significant housing wealth that can help to maintain or improve lifestyles as we age.

They have invited nine prominent think tanks from across the political spectrum to contribute to the Hanover@50 Debate. Their provocative views aim to prompt a fresh look at housing and ageing.

Interestingly, the sixth think piece in the Debate, ‘Downsizing in later life and appropriate housing size across our lifetime’, calls for a fresh look at under-occupation and housing in later life.

Author of the piece, Dr Dylan Kneale, argues that asking older people alone to downsize is “ageist”: his argument is that we should be discouraging under-occupation through life. Dr Kneale suggests that it is in the interest of us all to consider how much housing we consume and the benefits of this in financial and other terms. In English equality law, an offence is produced if a prohibited behaviour is conducted against a protected characteristic to a group of people (in indirect discrimination). So is “targeting” older people with dementia to live well “ageist”?

The University of Stirling have produced an excellent publication entitled. “Improving the design of housing to assist people with dementia”.

But there has been relatively little work looking at the overall size of the accommodation of persons living independently with dementia.

It is, arguably, in the interests of society generally that expenditure on health services and residential care is reduced wherever possible. Good dementia design can enable people to remain at home for longer and can also reduce the likelihood of them having falls.

One of the main reasons why people go into a care home is because they have had a fall. Other positive outcomes of good design can include lower levels of agitation, confusion, restlessness and disorientation because the person is less distressed.  So, is it actually “ageist” to identify a group particularly at risk, older people with dementia, and to think about what might be more suitable for their aspirations to live independently?

This is particularly important, if you consider that the purpose of policy is to encourage older people with dementia to live better independently.

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My presentation for my book launch of 'Living well with dementia' for 15/2/14

This is a talk I will be giving in Camden at 3pm to guests of mine, to celebrate the launch of my book on living well with dementia.

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Sexuality and personhood cannot be ignored for persons developing a dementia

Many of us have been in the situation where one bit of serious event is quickly followed by another serious event. Imagine, having just been told that you may be developing a dementia that you feel forced then to tell the medical establishment that you’re in fact gay, and you’re actually a very private individual.  Many elderly LBGT individuals now became adults in a time when homosexuality was considered to be unnatural, wrong, deviant and the basis for discrimination. If you were a gay man aged 80 today you may have developed your sense of identity and self-worth in a secret world where people like you hid their identities and maintained a very different public persona. You would have been 44 when the American Psychiatric Association declassified homosexuality as a mental disorder in 1973.

The past of medicalising homosexuality is indeed inglorious as described here. Evelyn Hooker’s pioneering research in the 1950s is said to have debunked the popular myth that homosexuals are inherently less mentally healthy than heterosexuals, leading to significant changes in how psychology views and treats people who are gay. In conjunction with other empirical results, this work led the American Psychiatric Association to remove homosexuality from the DSM in 1973 (it had been listed as a sociopathic personality disorder). In 1975, the American Psychological Association publicly supported this move, stating that “homosexuality per se implies no impairment in judgment, reliability or general social and vocational capabilities…(and mental health professionals should) take the lead in removing the stigma of mental illness long associated with homosexual orientation.”

This is yet another example where it matters that you’re a person not a diagnosis. How you’re navigated from that point through the care services, quite clearly, is not just a matter of law (equality law which should legislate against you being discriminated against), but is also a matter of culture. Whilst cultural attitudes to LGBT citizens, it can only be the case that once you’ve met one LBGT person you’ve only met one LBGT person, in the same way once you’ve met one person developing dementia you’ve only met one person developing dementia. Nonetheless, it is important for policy-makers, care providers and the general public to have a working approach to people who happen to be LGBT encountering the care services. For many people now, it is near impossible to imagine what it was like to live in constant terror of being discovered. Just 50 years ago, staggeringly, there was no protection in law from prejudice and discrimination, and it was unthinkable that gay relationships could be formally acknowledged through a civil partnership. It turns out that a high percentage of older LGB people have experiences of mental health problems, including an increased risk of suicide attempts and selfharm. The recent Opening Doors survey (Phillips and Knocker, 2010) found that one-fifth of respondents had experienced a mental health problem in the past five years.

As Sally Knocker (@SallyKnockerdescribes in her report “Perspectives on ageing: lesbians, gay men and bisexuals” for the Joseph Rowntree Foundation (January 2012),

“It is difficult to be sure of the size of the older lesbian and gay population, as there are still no census figures regarding sexual orientation. Stonewall estimates that 5–7 per cent of the population is gay or lesbian, and this estimate is accepted by government agencies. The total population of people over the age of 55 living in the UK is 17,421,000 (based on 2009 mid-year statistics) and 5–7 per cent of this is between 871,045 and 1,219,470 people (roughly equivalent to the population of Birmingham). Older lesbian and gay people therefore make up a very sizeable minority community, yet their views are rarely sought as a distinct group.”

Not all people with dementia are old, but there are potentially two effects at play here. Ageism  is stereotyping and discriminating against individuals or groups on the basis of their age. The term was coined in 1969 by Robert Neil Butler to describe discrimination against seniors, and patterned on sexism and racism. Likewise, everyone has the right to access healthcare, regardless of their sexuality or gender identity. Lesbian, gay, bisexual and transsexual people may have poor experiences of health services or social care because of negative attitudes to sexuality or gender identity. This may include an assumption that someone is heterosexual, discussing a patient’s sexuality when it’s not relevant to their care, or refusing care because of their gender identity or sexuality. Negative experiences of health or social care professionals should not discourage you or the person you care for from seeking treatment. The Equality Act [2010], legislated in the final days of the last Labour government, makes it unlawful to discriminate on the grounds of sexual orientation or to discriminate against someone who intends to undergo, is undergoing or has undergone gender reassignment, in such a way that acts to a detriment.

The various definitions are as follows:

  • Lesbian : a woman whose primary sexual and emotional attraction is towards other women
  • Gay (can be used for both gay men and lesbians) : a person whose primary sexual and emotional attraction is to the same sex
  • Bisexual : a man or woman who is sexually attracted to both men and women
  • Transgender : a man or woman whose gender identity is at odds with their biological sex
  • Intersex : a person born with sex chromosomes, external genitalia or an internal reproductive system that is not exclusively male or female

It’s an important issue as reduced access to networks of gay or lesbian friends, gay or lesbian interest or social groups and to the broader lesbian and gay communities have been found to contribute to reduced health outcomes for lesbian and gay people with dementia. This can lead to social isolation and loneliness, itself leading to stress and depression, and therefore the general wellbeing of LBGT persons living with dementia may be under pressure for a plethora of reasons.

Encouragingly, however, policy, in its general direction of appreciating the ‘I am a person not a diagnosis’ mantra, has applied personhood to thinking about sexuality in persons with dementia, in a way which might have happily surprised even the late Tom Kitwood himself. In Heather Birch’s “It’s not just about sex! Dementia, Lesbians and Gay Men” presented at the Alzheimer’s Australia Conference, Adelaide 2-5 June 2009, Professor Dawn Brooker’s message about person centred care was cited at the plenary session, viz:

Paul and Mark had been together for almost 20 years when Mark was diagnosed with dementia. When Mark went into aged care, Paul felt that his world was torn apart. He wanted to tell staff that his partner is the same person that he met and fell in love with, and how much pain he felt when Mark didn’t always recognize him. He wanted staff to know that dementia didn’t differentiate between a gay or heterosexual person. He wanted to tell them he had the same trauma and grieving and that he loved his partner like heterosexual couples do. He didn’t tell staff, because he didn’t know if they would understand.

And yet a person who does not feel easy with expressing sexuality is hugely problematic for an approach based on personhood.

Personhood slide

[Source: slides of a talk entitled “IN or OUT of the CLOSET: ending the invisibility of LGB and TI people in dementia, ageing and aged care services” by Norman Radican, LGBTI Project Officer and CaLD Liaison Officer, Access and Equity Unit, Alzheimer’s Australia SA.]

In a jurisdiction, Australia, generally considered to be more progressive than ours, there has been a real thrust in wishing to improve access and equity in various cultural groups. Access to services is determined and influenced by diverse social and cultural factors which impact on an individual’s capacity to enter the health service system and their ability to engage that system to provide them with the best quality services for their needs. And equity in dementia and aged care services supports the right of every individual to the highest attainable standard of care regardless of their age, culture, race, religion, language, gender, sexual orientation, geographic location or socio-economic status. Aside from dementia, the principles of access and equity appear to be important in our jurisdiction with the introduction of clinical commissioning groups, pursuant to the Health and Social Care Act [2012].  A recent document “Taking the lead: How clinical commissioning groups are changing the face of the NHS” describes how National charity Stonewall is working with five CCGs to develop a health champion programme. The CCGs are: East and North Hertfordshire CCG, Northern, Eastern and Western Devon CCG, Nottingham City CCG, Tower Hamlets CCG an Wirral CCG. Each CCG will get free support to develop health services for lesbian, gay and bisexual people.

A body of work looking at the experiences of LBGT individuals in health and social care contexts and the ways in which they navigate the disclosure of their sexuality to service providers unfortunately confirms the presence of homophobia (irrational fear of, or aversion to, gay or lesbian people) and heterosexism (the assumption that all people are heterosexual and that heterosexuality is the only “permissible” sexuality). A critical issue for respondents in the study by Brotman and colleagues (Brotman et al., 2007), for example, was the fear of having to come out to service providers or, worse, of having forcibly to “return to the closet”. These concerns align well with research undertaken in the UK exploring the experiences of ageing as a gay man or lesbian woman. Only 35% of respondents in the study by Heaphy and colleagues (Heaphy et al., 2003) study, for example, were likely to be positive towards gay and lesbian service users, and respondents described differential treatment, experiences of hostility and a generalised lack of understanding of their lifestyle choices. Disappointingly, they generally understood health and social care providers to operate according to heterosexual assumptions, meaning there may be a generalised failure to address their specific needs. For many of the participants in this study, the entry of service providers into their lives was the pivotal point at which their sexuality became evident to others, as their previously private lives were exposed to public scrutiny and they were thus obliged to decide whether or not to come out to service providers.

colourful

In a paper entitled “Coming out to care: gay and lesbian carers’ experiences of dementia services”, Dr Elizabeth Price from the University of Hull  reports on findings from a qualitative study, undertaken in England that explored the experiences of 21 gay men and lesbian women who care, or cared, for a person with dementia. The aim of the study was to explore how a person’s gay or lesbian sexuality might impact upon their experience of providing care in this context. Data collection occurred over a 4-year period. The authors concluded:

“It is perhaps time, therefore, for service providers to begin to critically consider their attitudes and responses to carers whose social identities are increasingly diverse, for the ways in which those responses are framed can impact significantly on carers’ experiences of service pro- vision and the relationships they share with providers and, more importantly, the people they support.”

Psychological security” is therefore an emergent theme which Sally Knocker describes elegantly as follows on Darren Gormley’s (@mrdarrengormley) blog:

“The first core need seems to me to be one of psychological safety. A great deal of emphasis is placed on keeping people physically safe, but emotional safety can be harder to measure or safeguard. Those of us who are gay and lesbian will have spent a lot of our lives making almost daily assessments of whether we feel safe to be open about who we are – whether it is booking a double bed in a hotel, meeting someone new at a party, going to the doctor or buying a book or a magazine.

We will be used to be being vague about our partners, using ‘they’ rather than ‘she’ or ‘he’.  We will constantly try to gauge whether the person in front of us in a social or work situation is likely to be judgemental or relaxed. If someone is religious, does this mean that they are more likely to think I am a ‘sinner’ or someone to be pitied or ‘saved’? Is a younger person less likely to be shocked? Am I safer in a big cosmopolitan city like London or Manchester than I will be in a village in Derbyshire or in Wales?”

And Sally describes that communication is a pivotal aspect of this:

“We therefore need all health and social care professionals coming into contact with people who are lesbian, gay, bisexual or trans to give plenty of positive indications that they ‘don’t have a problem’. As a personal example of this, I remember a midwife visiting our home shortly after our daughter was born. She was an older black woman with a Christian cross round her neck and I am ashamed to admit that my own prejudices and assumptions about age, culture and religion kicked in, so I felt very apprehensive about how she would react to my partner and me.”

Trust therefore becomes a key issue. LGBT individuals and their partners and friends will need reassurance that their rights to privacy will be respected. Dementia may mean a reduction in the ability to conceal and self-censor behaviour and information disclosure.

LGBT individuals may also have concerns about confidentiality, uncertain about who may have access to their personal information. As the data sharing drive continues in the NHS, this may become more of a policy issue in the forthcoming years. This fear may be based on previous bad experiences, and may not trust in representatives of authorities, official organisations and institutions. They may think a care worker will judge them, pity them, avoid physical contact, treat them as an object of curiosity, betray confidences, provide poor quality services or reject them. And for persons with dementia in residential care, other residents, with whom they share very little in terms of life experience or way of life, may demonstrate prejudice towards a non-heterosexual resident or their family of choice. This of course incredibly difficult to ‘legislate against’. Services may be designed on the fundamental assumption that people using their services are heterosexual. In such a system, LGBT individuals then become invisible.

Personhood is all about challenging assumptions, which we can all make without a malicious bone in our body. The problem with some of these assumptions is that they can lead to quite hurtful prejudices, especially when consolidated in  how our culture operates. The fact that not some persons with dementia are young of course challenges a yet further assumption, and imagine if you’re that person who not only has to tell the whole world about your sexuality but also you’re most probably developing one of the dementias. The medical model is in an excellent position to ignore these challenges, but to do so would be a massive failure. There’s no doubt we’ve come a long way, but, as is so often the case, it’s not only a case of where you’ve come from but also where you’re ultimately going to.

References

Brotman S., Ryan B., Collins S., et al. (2007) Coming out to care: caregivers of gay and lesbian seniors in Canada. The Gerontologist 47 (4), 490–503.

Heaphy B. & Yip A.K.T. (2003) Uneven possibilities: understanding non-heterosexual ageing and the implications of social change, available at: http://www.socresonline.org.uk/8/4/heaphy.html.

Phillips, M. and Knocker, S. (January 2010) Opening Doors Evaluation The Story So Far… Executive Summary, available at: http://www.openingdoorslondon.org.uk/resources/Opening%20Doors%20Evaluation%20Report%20-%20Executive%20Summary%2023%2002%2010%20(2).pdf

Price, E, (2010) “Coming out to care: gay and lesbian carers’ experiences of dementia services”, Health and Social Care in the Community, 18(2), pp. 160–168.

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Book launch for 'Living well with dementia' and full details

Picture above of Norman McNamara (left) and me at the Queen Elizabeth II Centre yesterday.

A summary of the book and a programme for the book launch (by invite only) is here.

Here is the cover with Charmaine Hardy’s flower pictures. Charmaine Hardy is a key #dementiachallenger (@charbhardy).

LWD

Links to material

 Amazon page

http://www.amazon.co.uk/Living-Well-Dementia-Importance-Environment/dp/1908911972

Publishers page

http://www.radcliffehealth.com/shop/living-well-dementia-importance-person-and-environment-wellbeing

Contents 

Dedication • Acknowledgements • Foreword by Professor John Hodges • Foreword by Sally Ann Marciano • Foreword by Professor Facundo Manes • Introduction • What is ‘living well with dementia’? • Measuring living well with dementia • Socio-economic arguments for promoting living well with dementia • A public health perspective on living well in dementia, and the debate over screening • The relevance of the person for living well with dementia • Leisure activities and living well with dementia • Maintaining wellbeing in end-of-life care for living well with dementia • Living well with specific types of dementia: a cognitive neurology perspective • General activities which encourage wellbeing • Decision-making, capacity and advocacy in living well with dementia • Communication and living well with dementia • Home and ward design to promote living well with dementia • Assistive technology and living well with dementia • Ambient-assisted living well with dementia • The importance of built environments for living well with dementia •  Dementia-friendly communities and living well with dementia • Conclusion

Introduction

There are probably close to one million people currently living in the UK with one of the hundreds of dementias, it is thought.

Plan [by prior invitation only]

Please do not attend if you have not been invited – there are strict limits for both venues.

Saturday February 15th 2014

3 pm               I will give a talk on ‘Living well with dementia’ at the Arlington Centre, 220 Arlington Rd, London, Camden NW1 7HE.

I will introduce my book, and how this has become a critical plank in English dementia policy. this will be followed by tea and coffee for my guests to meet each other.

The book will be available to see (due to be published on January 27th 2014), and arrangements will be made for the book to be made available at a discounted rate from the publishers.

7 pm                Dinner at Pizza Express, Southampton Row, London. WC1

(near the National Hospital for Neurology and Neurosurgery, Queen Square, London), 114-117 Southampton Row, London.

Background

There is actually surprisingly little awareness of what “wellbeing” and “living well” actually mean. In the absence of an understanding of the academic background to these terms, they are at risk of being used as merely marketing devices. And yet, their relevance is very real. The Care Bill is just one recent example of a statutory instrument where wellbeing has to be given priority in commissioning decisions, and be seen to do so.

Sadly, relatively uniquely, I have nothing to gain particularly by discussing these ideas. I did my own Ph.D. in dementia at Cambridge, and, also from a medical background a long time ago, I hope that I can give a balanced, accurate account of some of the policy decision-tree in dementia in England. “Living well with dementia” is, in actual fact, the name of the five-year national dementia strategy for England, which is (hopefully) about to be renewed.

A diagnosis should not be the first step to medical professionals or the rest of society in writing an individual off. My views are deeply entrenched in inclusivity, reciprocity and solidarity, and so it will not surprise you that I do not feel myself in competition with anyone. The people who are most influential to me in my view of the dementias, as an academic, are those people living with dementia. I hope many of them are living well, but it should be the aim of everyone for us all to live better. My book hopefully is a realistic look at various policy planks, including the proposed use of assistive technology, better design of the home and built environments, forming stronger communities, and promoting various lifestyle activities.

It’s an important narrative which has a huge amount of evidence about it, and my simple aim has been to take it out safely out of the worlds of academia and wonkland, and to bring it to the general public. I hope you enjoy my book!

What is “living well with dementia”?

This book is quite unusual as it is not a medical textbook, and yet I feel the book would enormously helpful and interesting for senior doctors working in this specialised area. There are common myths about ‘living well’. It’s not just about happiness. It’s not simply the absence of illness. It’s about something uniquely and personal. For any one person, it’s a complex interplay of cognitive factors (such as reasoning and memory), mood, and psychological and physiological wellbeing (such as physical and social factors).  One of the earlier chapters is devoted to discussing the various definitions of ‘living well’, and how this might possibly be measured.

I believe, pretty, strongly that this is not a sterile academic debate. It’s about fundamentally what we’re like as persons, our interaction with one another, our interaction with the environment, quality of care, and properly funded health and social care services. The medications which have been developed sometimes have been marketed with rather hyperbolic claims, but for many the ‘anti-dementia’ drugs known as cholinesterase inhibitors have rather modest effects. Meanwhile, the reality is funding for community clubs encouraging people with dementia to meet up and participate in activities has been threatened, and funding for advocacy for certain persons with dementia to defend their legal rights has been withdrawn altogether.

“Dementia” is likewise not an unitary phenomenon. The term ‘dementia’ is often used synonymously with Alzheimer’s disease, which does typically present with memory problems, but there are hundreds of different types of dementia in the world, some of which do not even present with memory problems. This conflation in language has hampered a cogent narrative on how we diagnose dementia – and there is currently concern that some individuals are receiving a diagnosis of dementia rather too late – and how we ‘cure’ dementia. Knowing what type of dementia a person may live with (the cognitive neurology) can potentially allow people to be on the lookout for potential challenges that person might face – e.g. spatial navigation, which could be addressed through appropriate signage in the external environment. Knowing what type may also be particularly relevant to communication techniques, but often basic things in conversation can often be poorly done quite disappointingly.

I got through my entire undergraduate medical training at Cambridge, and indeed a neurology foundation year job at the National Hospital for Neurology and Neurosurgery at Queen Square, without ever knowing about Tom Kitwood’s seminal work on “personhood” (1997). And yet this concept of persons with dementia, rather than necessarily patients, is fundamental to how I feel about this subject. I have a few friends with dementia. I learn loads off them. If one friend, for example, supports surveillance monitoring through GPS tracking, I support him or her. If it’s considered to be an unacceptable intrusion on personhood, I respect that too. But the point is, I don’t think it’s right for others to “judge” what people can’t do – it’s what persons with dementia can do which counts. I do not discuss factors involved which may contribute to delayed diagnosis across a number of jurisdictions, but I do address how English policy has attempted to identify people with dementia.

I wear a number of  ‘academic hats’. One of them is, surprisingly, innovation management. You’ll see this influence in my book towards the end. I think of persons with dementia as part of the ‘network’ needed to bring about a cultural change in how healthcare views dementia, in a form of “distributed leadership”. In this network, there are many actors, not just the “usual suspects”. Adoption of innovations also looms large in my book, with two chapters devoted to assistive technologies (and the research behind them) and  ‘ambient assisted living innovations’. It’s just incredible to think how much progress has been made in this area, ranging from output from the Design Council to that from massive EU-funded initiatives. Ultimately, there’s a good economic case as well for promoting living well with dementia. Nonetheless, whilst being optimistic, I have endeavoured not to produce a sanitised version of ‘living well with dementia’: I describe for example living well in end-of-life care, and particular phenomena which might be particularly relevant here.

But the problem with wearing so many hats is that you can all too easily enter a ‘silo mentality’. It’s though definitely the case the various topics do connect together. Whatever your views about the policy drive towards a ‘timely diagnosis’, a prompt and correct diagnosis can potentially lead to better care. Housing is one of the important ‘social determinants of health’, and attention to what works best in the external environment and through design features of the home can massively improve the quality of life of a person with dementia. Hospitals can be very disorientating for patients with dementia too, and this must be borne in mind when designing a ward environment – patients with dementia represent a high proportion of acute presentations in the elderly too. And adopting a community-oriented approach means that a person with dementia is a friendly and supportive environment, and this of course requires some ethical reconciliation with the themes of autonomy and independence. This has been an important converging area of policy, and goes including the person with dementia in any decision-making, reflecting key aspirations of choice and control (whatever your ideological viewpoint).

The main aim of this book is to take the discussion out of a specialist area, in such a way that we – as citizens – can all discuss the issues involved, and come to an informed opinion. I hope therefore you enjoy the book!

Key reference

Kitwood, T. (1997). Dementia reconsidered: The person comes first. Buckinghamshire: Open University
 Press.

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Disclosing the dementia diagnosis – where can the delays occur?

There’s been a lot of heat and frustratingly little light in the discussions in where the delays might occur in disclosing a diagnosis of a possible dementia. At worst, politicians and influential others (largely not medically qualified) have given the impression of ‘coasting’ GPs slowing down the process. But this would be to simplify an extremely complicated issue in such a way that causes considerable damage in English policy concerning dementia.

There are significant differences in the percentage of people with dementia receiving a diagnosis in England, Wales and Northern Ireland. In 2012, for example, it was estimated that 39 per cent of people in Wales had a diagnosis, 44 per cent in England and 63 per cent in Northern Ireland. As a result, the prime minister’s challenge on dementia aimed to increase diagnosis rates by two thirds by 2015, and the Scottish Government launched a similar initiative. Last year, a paper first presented in September at the “Preventing Overdiagnosis conference” in the United States – and subsequently published in the BMJ  – suggested that the drive to screen people for minor memory changes, often called pre-dementia or mild cognitive impairment, risks doing more harm than good.

The authors, led by David Le Couteur, professor of geriatric medicine at the University of Sydney, warned that expanding diagnosis in dementia would result in up to 65 per cent of people aged over 80 being diagnosed with Alzheimer’s disease, and up to 23 per cent of older people being wrongly labelled as having dementia. The authors argued that the trend for screening older people for minor memory change in the UK and the US is leading to unnecessary investigations and potentially harmful treatments; and that is diverting resources that are needed to care for people with advanced dementia. However, the benefits of a timely diagnosis are seen to be longer periods of higher quality life supported at home. Major consequential savings in hospital in-patient and residential social care costs are anticipated. Policies are favoured that deliver personalised support packages for people living at home, it is hoped, night be contemplated at the earliest juncture.

There are currently international variations in the opinions of family members and informal carers about whether they believe a diagnosis should be given to their loved ones. The obvious tension between doing no harm and giving people the right to make a decision about whether they wish to receive their diagnosis is an important bioethical debate. A study conducted in Brazil (Shimizu et al 2008) found that only 58 per cent of carers of people with dementia believed the diagnosis should be disclosed. In a similar study in Taiwan, this number was 76 per cent (Lin et al 2005) and in a study in Finland (Laakkonen et al 2008), 97 per cent of carers believed diagnosis should be disclosed to their relative. A study in Belgium (Bouckaert and van den Bosch 2005) found only 43 per cent of relatives supported disclosure, while in Italy, Pucci et al (2003) found only 39 per cent of relatives favoured disclosure. While the reasons for this global disparity are unclear, these are important considerations for nurses to be aware of before engagement with families of people with dementia. This disparity is perhaps a reflection on the uniqueness of people with dementia as well as the attitudes and feelings of their families.

The present interest in the UK in bringing forward diagnosis of dementia requires insights into the journey taken by people with dementia and carers on their way to reaching a diagnosis. (Please note that there are some persons with dementia who’ve said publicly in the past in the social media, “I am not on any journey.”) Early work had described a timeline of changes and events that occur during the journey of a person with dementia and their carers – in particular: first noticing that something may be amiss, first talking to a friend or family member about it; stopping driving; needing help with daily activities; first contact with a physician and receipt of a diagnosis. Key findings from that earlier work are that it took on average 1 year for the carer or the person with symptoms (PWS) to talk to a friend or family member.

An important aim of a paper by Tom A.C. Chrispa, Sharon Tabberer, Benjamin D. Thomas  and Wayne A. Goddard, entitled “Dementia early diagnosis: Triggers, supports and constraints affecting the decision to engage with the health care system”, published in Aging & Mental Health [Vol. 16, No. 5, July 2012, 559–565] was to identify influences on people’s decisions to make first contact with an HCP. The data suggest that carers of people with the symptoms of dementia who live at home are very often the ones to generate the first action to contact an HCP.There is very often a lengthy delay between first noticing symptoms of dementia and making first contact with Health Care Professionals (HCPs). This article identified influences on the decision to contact HCPs for the first time through a ualitative thematic analysis of 20 case studies of carer experience. Participants were carers of people who attended Memory Clinic services.

In only 2 of their 20 cases did the PWS actively make the first contact with an HCP to discuss their symptoms. In 13 cases, the carer was the main agent effecting the first engagement with HCPs. In one case, the carer and a social worker were closely involved together in deciding to engage HCPs. In three cases, a medical professional directly prompted a discussion with other HCPs about the issue. In one case, a non- medical professional initiated the first contact with HCPs.

A diagram of their key stages is helpfully provided by the authors:

Stages

Stage 1. The time between thinking something may be amiss and the time of first talking to a friend or relative about this.

This stage is on average 1 year in length. It is a period where the carer has noticed that something is amiss but they have yet to articulate their concerns. Delays in contacting others may arise due to carer’s fears of the resistance that the PWS may have towards the involvement of HCPs. The demands that other medical conditions place on carers can also provide a distraction.

Stage 2. The time between first talking to a friend or relative about this and first contacting an HCP to discuss the symptoms.

This stage is on average 1 1/3rd years long. Family members may resist the involvement of HCPs. Sometimes, it was the carer themselves and sometimes, it was other family members who resisted involving HCPs. There were debates among family members about what was being observed. An issue might be: “Is it just ‘old age’?” Families might on occasion disagree about the nature of symptoms but agree that care was needed and provide additional care support at home without involving HCPs. Sometimes the internal discussions concluded that the symptoms were not caused by a ‘health problem’.

Interestingly, the authors report that carers did not always recognise at first that HCP involvement might be an appropriate response to the behaviours being witnessed. Sometimes, it is a ‘trigger’ (an event, a build up of evidence) that is required to enable the carer to feel they have the necessary legitimacy to contact HCPs.

So it is clear from this initial paper that this unsightly slanging match between professionals, the public and politicians might be barking up completely the wrong tree. The dynamics in the relationship between the person with symptoms, and those closest, who might include friends and family, are undoubtedly critical, and I’ve been struck how this might be particularly important in the early onset dementias. In an important paper entitled, “The experience of caring for a partner with young onset dementia: How younger carers cope”, by Shirley Lockeridge and Jane Simpson in the journal Dementia, the authors describe explicitly a phenomenon of: “‘This is not happening’: carers’ use of denial as a coping strategy.” For example, in the behavioural variant of the frontotemporal dementia, the presentation is not problems in memory, but rather an insidious change in behaviour and personality noticed primarily by others not the person himself or herself. And possible explanations  offeredfor the changes in the behaviour and personality of their partner, according to Lockeridge and Simpson, have been rather varied, including post-viral fatigue, a brain tumour, stress at work and a ‘mid-life crisis’:

However, according to the authors, as time passed, younger carers and their partners began to adopt more emotion-focused strategies:

“This originated in the reluctance of their partner to acknowledge that they were experiencing any problems which meant that most carers had to use excuses and subterfuge in order to persuade their partner to attend medical appointments and assessments. Carers found that they experienced increasing anxiety as their partner’s behaviour deteriorated and their need increased to have clandestine discussions with their GP, with employers and with banks to take control of financial matters. Carers described using avoidance as a way of coping with the changes in their partner and spoke of behaving like an ‘ostrich’, ‘burying their head in the sand’ and ‘pretending’ that their partner’s problems were not serious. Carers were also acutely aware of their partner’s denial of their symptoms and described feeling as if they were adopting a ‘cloak and dagger’ approach to hide any information about dementia from their partner. Carers reported trying to maintain everything as ‘normal’, even up to the point of diagnosis.”

In an equally intriguing paper, “The personal impact of disclosure of a dementia diagnosis: a thematic review of the literature” by Gary Mitchell, Patricia McCollum and Catherine Monaghan in the British Journal of Neuroscience Nursing [October/November 2013 Vol 9 No 5]. the authors reviewed that decisions around disclosure of a diagnosis of dementia are not always patient-centred. The authors argued that a plethora of literature supports the notion that physicians do not always clearly and directly disclose the diagnosis to the person with dementia. The authors found that Bamford (2010) had suggested that the global rate of non-disclosure is around 40%. There are several reasons for this, but arguably the most pertinent is the emotional distress disclosure can potentially cause. This emotional impact can undoubtedly a crucial factor in carers’ attitudes and practitioners’ variability in disclosing the diagnosis to their patients, it is argued  (Robinson et al, 2011).

The findings of this review indicate that people who have recently experienced a diagnosis of dementia have feelings ranging from anxiety or fear to relief, or the enablement of future planning. Despite this mixture, the perceived stigma surrounding a diagnosis of dementia was evident in the majority of the literature. The act of non-disclosure, which is common globally, is a decision often taken by physicians or carers in a bid to promote non-maleficence (“do no harm”). The authors argued that numerous studies have demonstrated that family or physicians often conclude that beneficence or non-maleficence out- weighs the person’s autonomy and that a disclosure of the diagnosis of dementia to the person will cause harm; by withholding this knowledge the physician and/or family believe they are collectively doing good.

Non-disclosure can also be analysed through the prism of Tom Kitwood (1997) and his model of “malignant social psychology”. Malignant social psychology pertains to an environment where the person with dementia is treated differently owing to their being diagnosed with dementia (Kitwood, 1997). Key components of this model are disempowerment, infantilisation and withholding. Through non- disclosure, people with dementia have their diagnosis withheld by physicians or carers because of the poten- tial harm it could cause (infantilisation). This can ultimately serve to make the person with dementia more passive in their care (disempowerment).

There has been unsightly amount of finger pointing as to “who is to blame”. Often in the firing line is ‘primary care’ as the point of first point of contact for people with suspected dementia in ensuring early detection and effective ongoing management. Collaboration between general practices and specialist services is therefore essential to ensure a smooth pathway to diagnosis. Collaborative care is essential in the management of long term conditions, but joined-up working between specialist dementia services such as memory clinics does not appear to be comprehensive or universal. Memory service investment and access varies hugely across the UK. And with the current implementation of the Health and Social Act (2012), acting as a driver to privatised, fragmented services, there is a genuine risk this will get worse.

Furthermore, evidence reveals that the average UK consultation time varies from 7.4 to 11.7 minutes. As older people often present with complex health and social care needs, length of appointment time may be a barrier in meeting their diverse needs. Furthermore, there are people susceptible to dementia who may not have access to a GP or specialist support services such as those from deprived populations, the oldest old people or those without support networks. For true inclusivity and equitable access to health care, services might need to be much proactive in reaching out to those in communities who remain unregistered with general practice and lack access to care, regardless of social and cultural background and geographical location, and also taking into account cultural barriers to diagnosis.

The role of the nurse in raising awareness and improving the lives of persons with dementia has recently been come under sharp focus.While GPs may not be able to pick up on the early signs and symptoms of dementia with the constraints posed by the general practice setting, nurses work at the interface between the patient and their social environment and are therefore well placed to notice the early signs and symptoms of dementia . Prof. June Andrews, director of the Dementia Services Development Centre at the University of Stirling, and a former director of nursing, has argued clearly that she understands that testing for dementia at an early stage carries risks – but they are risks she would be willing to take.

Professor Andrews would like to see a greater role for nurses in dementia diagnosis, both in hospitals – particularly A&E – and the community.

“The logical and humane way forward is to emphasise the role of the nurse. The usual diagnosis points – GPs and psychiatrists – can be high quality, but you sometimes end up with a backlog, which means that people do not get the benefit of diagnosis. The risks of nurse-led diagnosis are small.”

An example of successful, collaborative working in practice is the Community Dementia Nurse (CDN) Service launched by 2gether NHS Foundation Trust (2011) in Gloucestershire. The CDN service is innovative in providing specialist and direct support regarding dementia to GPs.The role covers advice and support with diagnosis, management and treatment of dementia and care plans designed to address immediate care needs. However, this is targeted at those within populations who have access to GP surgery.

So, this is most definitely ‘work in progress’. The frustration of many who have felt that the diagnosis of dementia has been unnecessarily delayed is a very serious one. But blame is not particularly constructive, nor motivating for a service already at full stretch. And it is clear now that the problem embraces a number of problems, not confined to education and training standards of the current NHS workforce, but the extent to which those closest to people with dementia-like symptoms might prefer themselves the diagnosis not to be one of dementia. For example, a subtle change in personality could be a ‘mid life crisis’, but it might be as politically offensive to suggest this soon for danger of being bundled with dementia symptoms being misattributed as ‘normal ageing’.

The irony is that, while medical professionals cannot offend the key medical ethical principle of ethics, if persons have full capacity as far as the law is concerned (but have dementia-like symptoms), in the form of ‘coercive behaviour’, access to care or cure could in future decades come in a rather personalised form, whether this is personalised medicine or a personal-health budget.

References

Bamford C, Lamont S, Eccles M, Robinson L, May C, Bond J (2004) Disclosing a diagnosis of dementia: a systematic review. Int J Geriatr Psychiatry 19(2): 151–69.

Bouckaert F, van den Bosch S (2005) Attitudes of family members towards disclosing diagnosis of dementia. International Psychogeriatrics. 17, Suppl 2, 216.

Kitwood, T. (1997). Dementia reconsidered: The person comes first. Buckinghamshire: Open University
Press.

Laakkonen M, Raivio M, Eloniemi-Sulkava U et al (2008) How do elderly spouse care givers of people with Alzheimer disease experience the disclosure of dementia diagnosis and subsequent care? Journal of Medical Ethics. 34, 6, 427-430.

Lin K, Liao Y, Wang P et al (2005) Family members favor disclosing the diagnosis of Alzheimer’s disease. International Psychogeriatrics. 17, 4, 679-688.

Pucci E, Belardinelli N, Borsetti G et al (2003) Relatives’ attitudes towards informing patients about the diagnosis of Alzheimer’s disease. Journal of Medical Ethics. 29, 1, 51-54.

Robinson L, Gemski A, Abley C et al (2011) The transition to dementia–individual and family experiences of receiving a diagnosis: a review. Int Psychogeriatr 23(7): 1026–43

Shimizu M, Raicher I, Takahashi D et al (2008) Disclosure of the diagnosis of Alzheimer’s disease: caregivers’ opinions in a Brazilian sample. Arquivos de Neuro-psiquiatria. 66, 3B, 625-630.

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Housing: one of the forgotten social determinants of health and wellbeing for persons with dementia?

The way the ‘G8 dementia’ summit was articulated by politicians and the media was that we are on a ‘war footing’ against dementia, with military metaphors aplenty like ‘battle’ and ‘fight’. After the Second World War, the Labour Prime Minister Clement Attlee gave Aneurin Bevan responsibility for two tremendously sensitive posts: health and housing. Housing was crying out for attention. As a result of the war, Britain had several million bomb damaged houses in urgent need of attention and the public had been expecting the establishment of a national health service since the Beveridge report recommended one in 1942. Housing remains a huge issue in policy directions to improve the health and wellbeing of those 800,000 (or so) living with dementia in the UK.

In public health there is a growing acceptance that health is determined not merely by behavioural, biological and genetic factors, but also by a range of economic, environmental and social determinants. A safe environment, adequate income, meaningful roles in society, secure housing, higher level of education and social support within communities are associated with better health and wellbeing. It is these determinants that are generally known as the “social determinants of health”. Adequate housing means safe, secure and affordable shelter. Housing also provides the place where we connect with the wider community through education, employment, and community networks. Health inequalities are the ‘differences in health status or in the distribution of health determinants between different population groups’. Those differences are inequitable when they can be determined as being unfair or avoidable. The social determinants of health are the collective set of conditions in which people are born, grow up, live and work. These include housing, education, financial security, and the built environment as well as the health system. So unsurprisingly housing is critical for living well with dementia.

There is evidence of marked differences in health and social service use between old people with and without dementia. The hundreds of dementia diagnoses probably comprise the most important predictor of long-term care among old people. In a six-year follow up-study in Finland, 70% of women with dementia and 55% of men with dementia were institutionalised. The research evidence on hospital use is somewhat contradictory: some studies indicate that people with dementia are more likely, and others that they are less likely to be hospitalised than those without dementia. Hospital stays tend to be longer for people with dementia, and certainly constitute a large proportion of admissions ultimately in the elderly in hospital care.

Housing problems that impact on health can arise for five main reasons:

  • housing is not appropriately designed
  • housing is poorly located
  • housing is not secure
  • housing is not affordable
  • housing cannot be accessed at all.

Design for dementia is important because there are very substantial numbers of people with dementia living in every type of housing, and the numbers are increasing. It provides an exciting area in which multidisciplinary approaches can be fruitfully utilised, such as from architects, housing professions and neuroscientists. The levels of impairment experienced by different people will vary greatly. Some will be at the very early stages of dementia, and may not have even had a diagnosis. The issue of addressing “the diagnosis gap” is currently a powerful force within English dementia policy. Others will be seriously impaired and reliant on support from relatives or friends, perhaps supplemented by formal care at home. New housing should provide ‘lifetime’ or ‘barrier-free’ homes, embracing the principles of ‘universal design’. In keeping with this goal, the design process should address the needs of those with cognitive and behavioural impairment. Good design, many specialists feel, should begin at the inception of the project at sketch design stage.

Poor lighting can increase the incidence of hallucinations – especially if this creates lots of shadows. It is therefore important to be able to control both natural and electric lighting to prevent sharp variations in lighting levels, avoiding excessive brightness and shadowed areas. Furthermore, blinds can be useful for diffusing strong daylight, whilst for night time a simple bright central light source with carefully directed task lights are best. Many people with dementia will spend a lot of time simply looking out of the window, and if there is something to watch this can be life-enhancing. That is why it is often recommended that designers should try to ensure communal rooms have outdoor view of garden, and/or other locations where things are happening, e.g. a car park. Of course, expert opinions on such matters will vary, but it is a hallmark of an intelligent society that we can think about what could work best for people living with dementia. For many people, getting outside is possible and may be very important.

Prof June Andrews at Stirling, in “Dementia: finding housing solutions” (May 2013), describes that two-thirds of people with dementia live in their own homes or specialist housing, while one-third live in care homes. Most people with dementia say they would prefer to stay in their own home for as long as possible. Despite half of those who live in their own home living alone, the home can be the best place for someone to manage the consequences of dementia, particularly if accessible and adaptable housing to aid independent living. Adaptations, telecare, ambient assisted living and smart homes remain powerful constructs in English policy, reflected in a considerable R&D budget spend at EU level.

It is certainly an ambition for people with dementia to live independently and have access to support and advice services if they are diagnosed promptly. Many reach out to people living with dementia in the wider community, providing services such as floating support, assessment and delivery of adaptations and housing advice. The concept of a ‘dementia friendly community’ is indeed a wide-ranging one, but is not confined to a rather narrow scope of companies and corporations acting in such a way to be dementia-friendly to secure competitive advantage. It is hypothesised that dementia friendly communities will become one day in the planning and organisation of shared care in health and social care locally. When staff are equipped with the necessary skills, and there is continued investment in services, housing providers and home improvement agencies are able to assist with a wide range of housing choices for individuals with dementia. This includes making homes more accessible or more dementia-friendly or helping with moves to specialist housing. These organisations are also often able to help with day-to-day tasks such as shopping, household chores and organising domestic bills.

As an example, the Notting Hill Housing Trust in London has developed a dementia strategy, which sets out ways to raise awareness of dementia and encourage residents to seek help. The strategy has ensured their members of staff are informed about potential signs of dementia, which has led to innovation in practice and service delivery. Core to the strategy is a group of dementia champions who challenge colleagues and promote best practice. Housing organisations overall have a very good track record of providing specialist housing and delivering services that are designed to improve health and wellbeing, prevent falls and other accidents in the home and promote independence. Falls are of course hugely significant in the elderly, as individuals with osteoporosis in poor lighting conditions are particularly susceptible to hip fractures (which can lead to protracted hospitalisation). These housing services have been proven to prevent admission and readmission to hospital, allow rehabilitation after an accident or illness, delay the need for intensive care services and reduce the likelihood of emergency admissions.

One case study of an individual with dementia being supported to live independently in Extra Care housing highlighted savings of up to £17,222 a year to health and social care budgets. Housing organisations have also introduced assistive technology to ensure that people with dementia are able to stay independent and in familiar home environments. The report “”Extra Care” Housing and People with Dementia: A scoping review of the literature 1998-2008, Housing 21 (2009), on behalf of the Housing and Dementia Research Consortium with funding from Joseph Rowntree Foundation” by Rachael Dutton highlights the positive finding that there is mounting evidence that people with dementia living in ECH can have a good quality of life. However, the report also mentions“that some tenants with dementia can be at risk of loneliness, social isolation and discrimination.” Extra care can offer an effective alternative to residential care, and can delay or prevent the need for a move to nursing care. However, while many people with dementia have been able to remain in extra care housing until the end of their lives, “enabling all tenants, with or without dementia, to remain in place through to the end of their lives in extra care housing is not usually possible”.

Telecare solutions are a proven alternative to institutionalisation for people with dementia, helping individuals to retain independence and dignity and assisting their carers who might be unpaid family members, careworkers, or others. A range of sensors can be installed in the home, to support existing social care services, by managing environmental risks.  These sensors include a natural gas detector, carbon monoxide detector, flood detector, temperature extremes sensor, bed occupancy sensor and property exit sensor.  Should a sensor be activated, an alert is sent either to a monitoring centre or a nominated carer.  Telecare supports both safety in the home and security outside the home – where 60% of people with dementia experience the risk of ‘wandering’ dangers. Dementia can be distressing for carers, as it places them under immense pressure to help. This leads to the often hidden problem of carers suffering psychologically and financially themselves. Telecare can potentially help relieve some of this pressure – enabling carers to take a well-earned break, secure in the knowledge that they will be contacted immediately if needed. Technology can also help staff to provide a safe environment for someone through flood detection, gas shut-off systems, pagers, and medication alerts.

As a frontline service, all housing professionals work with people who have dementia, most likely in the earliest, sometimes undiagnosed, stage but also as the illness progresses. Housing professionals will also be involved where a person with dementia may be able to return home after a period in a health or social care setting following a period of crisis. Inevitably, national policy also emphasises the need for a timely diagnosis to be able to anticipate or prevent “crises”. There are therefore housing staff who work with tenants who would benefit from an understanding of what the dementias are, how to identify the features, and what to do next in terms of referral and/or discussion with health or social work colleagues.  However, there is no doubt that the approach of joining up health, wellbeing and housing is just the tip of the iceberg; there needs to be better awareness of the dementias generally, attention and resources for dementia-friendly communities, and a real attention to detail (such as design features and innovations of the home). But this is a marathon, rather than a sprint.

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Does electronic surveillance of persons with dementia conflict with personhood?

Families, friends, and carers of people with dementia may be faced at some time with the problem of what to do if the person begins to wander. Wandering is quite common amongst people with dementia, and can be very worrying for those concerned for their safety and living well. The problem of wandering in dementia is not trivial. It causes stress to carers, referrals to psychiatric services and hospital admissions, problems in the hospital environment, and an unknown number of deaths.

The last Labour government developed a reputation for being authoritarian in the domain of civil liberties, reaching a peak, arguably, with its legislation for terrorists for detention without trial. Governments of all shades have at some point or other wished to stamp their liberal or libertarian credentials, and indeed in relation to the free market. For example, an outsourcing company within the lifetime of this government got into trouble over allegations to do with prisoner tagging.

Different companies have been pitching their products – tiny cameras, wearable sensors, connectivity services – mainly at the US and other rich countries where abductions and violent crime are mercifully rare. Google recently, to much media attention, launched with great fanfare its ‘Google glasses’. Indeed, a Scottish friend of mine recently logged onto her Facebook in Bilbao in Spain, and Facebook cunningly producing a sponsored advert for a hotel in Bilboa. When you make a tweet, you have an option of activating the ‘location detector’ of your tweet. This article is not about terrorism or the use of smart apps to book hotels, but the point is merely that a plethora of converging evidence might suggest that a technology explosion may be going hand in hand with a surveillance culture, and it is perhaps no big surprise that this is also having an effect on dementia care.

I asked Alex Andreou, who has written with remarkable authority and passion about his own mother living with dementia in the Guardian newspaper, what he thought of the general issue of electronic surveillance of persons with dementia?

“I would welcome it. Terrifying when I see reports about people lost.”

When I reassured Alex that I would not mention this name, Alex said, “I don’t mind if you do.”

Sussex Police has been trialling the scheme at a cost of £400 a month, and hopes it will save the force thousands of pounds by avoiding call-outs which can take up a lot of police officers’ time and can involve the use of search helicopters. A number of local authorities are already using similar devices to track sufferers, but this is believed to be the first time a police force has taken on such a scheme in May 2013. If the trial is successful, there are ambitions to roll it out across the county to a much larger population. The idea is that people with dementia can wear the tracking device around their neck, clipped to a belt or on a set of house keys. It works through a Global Positioning System (GPS) – a space-based satellite navigation system that is used by ‘sat-navs’ in vehicles. It is linked to a 24/7 response service which the wearer can call at a press of a button. The device is called “MindMe”, and family and friends can log into the system whenever they like to find out where the person is.

It is claimed that the Police regularly have to search for missing people with dementia, and that it is genuinely heartbreaking to see the torment that their families are put through and to see the impact it has on the person with dementia when they are found. A £15 (€18; $23) pair of transmitters would, for example, sound an alarm if the person gets separated. GPS trackers not intended as a general panacea, but they do mean that patients can be found more quickly. This is thought to be useful for several reasons. Firstly, rapid recovery reduces risk. Typically, carers delay calling for help, wanting to avoid involving the police if possible. Half of all people with dementia who are missing for more than 24 hours can die or become seriously injured. However, 40% of those with dementia get lost at some point, and about 5% get lost repeatedly. It is this 5% who are the most obvious candidates for a tracker. The first episode of getting lost is usually not predicted, and is often followed by restrictions on freedom and increased observation, reducing the perceived need for a device.

On November 11th 2013, Norman McNamara, a campaigner for awareness of the dementias himself who himself is living with a dementia, announced that, that Ostrich Care would be making available free GPS trackers to all persons who are diagnosed with dementia, and to registered carers (in the UK, not uniquely to the Torbay area.) A monthly ‘maintenance fee’ still has been made though. The info from Ostrich Care is here (ht: Jane Moore).

But in reality there is no right answer. The situation is complex. Decisions about limiting a person’s liberty should remain a matter of ethical concern even when technology finally makes the practical management of wandering easier. This approach has as its backdrop evolving body of work on technology and dementia, known as “assistive technology”, where collaboration and engagement with “users” has been a guiding principle. The earlier literature on electronic surveillance monitoring pointed out that the technique could be associated with objectification, infantilisation, and disempowerment, which are negative phenomena. The acceptability of surveillance monitoring has generally been researched among formal and informal carers only, with the views of those living with dementia curiously under-represented.

The whole issue can raise strong emotions. Dot Gibson, general secretary of the National Pensioners Convention, has been reported as feeling that the Sussex Police scheme is “inhumane”, “barbaric” and flouts fundamental  human rights. This criticism has been bundled with a general criticism of the care system, with Gibson adding,  “This is trying to solve a human problem with technology”.

According to Gibson:

“Using electronic tags on dementia sufferers raises very important issues about the individual’s human rights. They haven’t committed any crime – they’ve just grown old. This is just about saving money rather than treating people with dignity. Rather than tagging people we need better social care out in the community. Dementia patients need human interaction not tagging.”

In terms of medical ethics, “autonomy” relates to self governance or personal control. One of the main aims of implementing these surveillance monitoring devices is the promotion of increased independence. Most carers, whether relatives or paid staff, want the best for the person they support. Alongside doctors’ duties of beneficence, non-maleficence, and justice, respect for patient autonomy is invoked as a cardinal principle. The legal courts in various jurisdictions have confirmed the principle of respect for patient autonomy in the language of rights of self-determination. This is not merely viewed as a a rejection of a paternalistic tradition of ‘doctor knows best’, but includes differing philosophical positions including those of Kant.

There are a number of possible reasons why a person with dementia might wander, and this is related to which parts of the mind or brain are affected at any particular time. Here is yet another example where it is unhelpful to think of ‘dementia’ as one big homogeneous group. There are hundreds of different causes of dementia, and this might impact on why a person with dementia wanders. However, any patient living with dementia can of course become acutely confused, just like any other person (particularly in the elderly age group due to some underlying infection, for example.) Various important causes include a changed environment, excess energy, searching for the past, expressions of boredom, where it might be difficult to establish an underlying ‘medical cause’.

Dementia of the Alzheimer type is the most common type of dementia worldwide. Memory problems are the hallmark of dementia of Alzheimer type. Indeed, wandering may be due to a loss of short-tem memory. A person may set off to go to the shop or a friend’s house, and then forget where they were going or why. Or they forget that their partner has told them that they were going out for a while and set off in search of them. In another type of dementia known as Lewy Body dementia, visual hallucinations can occur: in other words, seeing things which aren’t there. An inability to distinguish hallucinations from reality may cause the person to respond to something that they dreamed, thinking that this has happened in real life. Lewy Body dementia tends to affect the younger age group (by younger, I mean below the age of 60).

In advanced dementia, whatever the cause of dementia, people can lose their regular ‘body clock’ or circadian rhythm. People with dementia may suffer from insomnia, or wake in the early hours and become disoriented. They may think it is daytime and decide to go for a walk. Poor eyesight or hearing loss may mean shadows or night sounds become confusing and distressing. Also, in advanced dementia, walking may actually ease discomfort, so it is important to find out if there is any physical problem or medical condition and try to deal with it. Tight clothing, excessive heat or needing to find a toilet can all cause problems. Also, changes that have occurred in the brain may cause a feeling of restlessness and anxiety. Agitation can cause some people to pace up and down or to wander off with no apparent purpose. They may fail to recognise their own home, and insist on leaving.

Some caregivers appear to like the idea of electronic tracking devices if these can ensure that the wanderer is found more swiftly. Some argue that for, the sake of safety, a slight loss of liberty might be a price worth paying. In the case of someone with moderate to severe dementia who wanders, electronic surveillance monitoring arguably satisfies an ethical principle and decreases stigma. Being lost and half dressed in the middle of the night near a dual carriageway to any reasonable unlooker is hugely stigmatising, and electronic surveillance monitoring could avoid this. However, there is a concern that wandering as a behaviour of the dementias, like many aspects, is generally becoming overly medicalised, or turned into a medical problem. The inevitability of this is to turn it into a medical problem in need of a medical solution. This in turn potentially legitimates social control efforts in the name of ‘protecting’ wanderers.

Social control through the medical gaze encourages an environment of pharmacological surveillance and physical confinement. We all know of the dangers of the approach of the “chemical cosh”. Neuroleptic drugs have harmful side effects and show only modest efficacy in managing some behavioural problems in dementia. Physical restraints, such as safety belts and bedrails, are used in nursing homes all over the world, with a prevalence somewhere averaging around 50%. There is growing awareness that the use of these means can have significant psychological and physical disadvantages, such as increased cognitive decline and decreased mobility and has even led to death in some cases. Therefore, it is argued legitimately that the use of physical restraints should be diminished. Counsel and Care’s famous publication ‘The Right to Take Risks’ (1993) lists at least twenty forms of restraint commonly used at present, ranging from literally tying someone down to the use of sedatives, locks, glass panels in doors, threats and poverty. Despite the negative press associated with electronic surveillance monitoring devices in some quarters then, this new technology, developed and perfected as a result of its uses in prisoner tagging, may offer somehope of a more humane solution to a difficult problem. Here, language is crucial, as “surveillance monitoring” is a preferable term to “tagging”, as it is completely objectionable to use language for people with dementia normally reserved for criminals. You cannot be ‘convicted’ of having a diagnosis of dementia. Whilst some ideologically might feel nervous of a somewhat libertarian-facing solution, the risks and restrictions of alternatives to surveillance monitoring, should perhaps be borne in mind.

Over the last decade, a new ethos in the management of wandering has evolved with a move towards promotion of safe walking, rather than the prevention of wandering, in order to balance a person with dementia’s need for autonomy with the need to minimise risk. Other non-pharmacological approaches include: behavioural approaches; carer interventions; exercise; music therapy; sensory therapies (aromatherapy, multi-sensory environment); environmental designs and subjective barriers (visual modifications that may be interpreted as a barrier but are not physically so). Evidence on the effectiveness and acceptability of the above interventions is limited. The availability of all alternatives will frequently depend on resources, attitudes and policies of health professionals, institutions and governments, and the precise legislative and regulatory framework.  For example, in the Netherlands, the Health Care Inspectorate promotes the use of surveillance technology as a way to diminish the use of more severe means of restricting freedom. In 2009, already 91% of the nursing homes were using some kind of surveillance technology in the care for people with dementia. In most developed countries, the legislation regarding the use of physical restraints is based on, among other things, guidelines of the United Nations and the World Health Organization and the European Convention on Human Rights (Council of Europe, 1950; General Assembly of the United Nations, 1948; World Health Organization, 2005).

Although surveillance monitoring might increase liberty in some senses, it has the potential to decrease autonomy and tracking devices might settle the anxieties of others without attending to the needs of the person with dementia. There are considerations from medical law and medical ethics too on the place of the family. Where the adult patient is unable to consent, both medical ethics and law allow for consultation with relatives. Indeed, consultation with the family is the default position in cases of adult patient incompetence. The general tradition of ethics can be denoted through primary concern with individuals; in fact, medicine’s traditions have a tendency to be individualistic. It could be that ‘taking friends and families seriously’ challenges that individualistic approach. For illustration, the doctor-patient relationship is structured in a manner similar to a contract between two individuals, and the doctor has a duty to the person/patient. Contrary to individualist perceptions of autonomy, “communitarians” acknowledge the significance of the person’s relations. This is of course particularly relevant if one wishes to pursue in English policy and elsewhere the notion of “dementia friendly communities”. If it can be mooted that liberals focus on what separates people from one another, communitarians see persons as fundamentally attached to each other. For such an approach to work, those advising concerned relatives need to be trained in not only dementia care but also in understanding and negotiating the different ethical perspectives of carers and professionals.

This is important so that professionals do not seem to be assume some high moral ground of civil libertarianism, as well as to allow recognition that our autonomy is exercised in the embrace of others. So in my opinion the use of surveillance technology, as either an infringement of human rights or as contrary to human dignity, as it reduces or infringes privacy and removes personhood, is only a small part of the issue. There is a danger that resorting to technology in general might result in a reduction in the essential human contact between caregivers and residents and could lead to a further decrease in staff in long-term care facilities. However, if this is a known risk, this can be mitigated against, and adoption of electronic surveillance monitoring might led to the evolution of a more secure environment (thereby reducing caregiver stress), but also increase liberty and dignity when compared with forms of physical restraint. The ‘threat to personhood’ is an important consideration, and the law itself regarding mental capacity as currently drafted in the English jurisdiction could indeed be too a blunt weapon. However, policy in general has been driving to empowering persons with dementia to have more choice and control than previously, and this policy driver is not at all insignificant.

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