Tag Archives: UNCRPD

An emphasis on outcomes not process is now much needed for dementia

Today was a pretty disastrous day for me as a member of the army of million unpaid family carers. Yes, I merely ultimately burnt dinner for us which I had slaved for for hours.

But I am enormously grateful to be in a loving relationship where it can be hard work – and I will definitely  still miss it.

I am trained as an academic physician in dementia, with both a research and professional, and personal, interest in the subject. Just ask anyone who has known me well for the last 25 years or so.

As an unpaid carer, but one of many, I don’t feel the aggrandisement of the words ’empowerment’ and ‘engagement’ are what I particularly want, though I think these interrelated concepts, popular with professional grant applicants, are very important.

As not a member of the ‘conference class’, I do not in any way resent those with the power, influence or ‘deep pockets’ fronting yet again conferences where the greatest and good can exchange best practice with one another.

As an unpaid carer, I think what I really desire are “dignity”, “time” and “space”. Of course these are not words which trip off the tongue of professional wonks or conference organisers, as they suffer from the perceived lack of ‘measurable outcomes’.

The managerial adage ‘if you value it, measure it’ unfortunately comes with some operational baggage, ‘if you don’t value it, don’t measure it.” To say I was alarmed at the lack of ‘caring well’ in “The Well Pathway for Dementia”, despite the consultation events which undoubtedly were seen to happen, is a mild understatement.

I don’t care about myself, but I do think it’s a kick in the teeth to those who are, or who are concerned with, unpaid carers, paid carers with parlous employment rights, clinical nursing specialists providing high quality care (including in end of life and palliative care), respite care (day centres, for example), care at home, and so on.

At the start of this year, I was able to celebrate with close friends and colleagues the launch of my third book on dementia, published by Jessica Kingsley Publishers, entitled “Enhancing health and wellbeing in dementia: a person-centred integrated care approach.”

My first book “Living well with dementia: the importance of the person and the environment”, written around the NICE Quality Standard 30, was published in 2014, and won best health and social care book of the year award for the BMJ Book Awards in 2015.

My second book, “Living better with dementia: good practice and innovation for the future” published in 2015, the first of mine to be published by Jessica Kingsley Publishers, with main foreword by Kate Swaffer was the one where I confronted eating well, incontinence, GPS ‘tracking’, whole person care, delirium, ‘sporting memories’, antipsychotics and diversity, to name but a few.

C8bSPC5XkAILqMN

Thanks to all my close friends who came to support me on this important day for me. All the speakers and all the delegates attended entirely free of charge – it was an amazing afternoon, I thought.

This third (and not the last) book reviewed extremely well from a wide range of interested parties. In this book, I considered what I perceived to be what elements of the integrated care pathway might need to be present.

After the diagnosis of dementia, which also can come with a sense of relief that there finally exists an explanation for a whole series of ‘difficulties’, many people describe their journey through the NHS and social care as baffling, perplexing and stressful.

At my launch event, I was lucky to be joined about a number of great speakers, who don’t often tour the conference circuit despite being heavily involved with aspects of topics which interest me in dementia.

I’d like to thank Majidur Rahman, a friend of mine from when I did my MBA 2011-3. Majidur meticulously archived the event in the film below in his rôle at Aleph Productions. Whilst it comes in at about 200 minutes, I hope you agree it provides a wonderful, illustration of what can happen when people come together with individual concerns and hopes.

I’d also like to thank Kate Swaffer, who kindly gave up time to see us all and to lead the discussion at the end of the day. Kate is CEO of Dementia Alliance International, the partner group of Alzheimer’s Disease International. For me, too much of what is not good in commissioning dementia is the obsession with unsound metrics. For example, whether or not you change hearts or minds in newspaper articles by saying or not ‘dementia victims’ in large font as the headline might not be covered with the overall number of ‘Dementia Friends’.

And special thanks to Lisa Rodrigues CBE – personal friend, personal inspirational mentor, fierce advocate for health – who hosted the whole afternoon for me brilliantly.

I agree with the need for public education about dementia, articulated well in the only English dementia strategy ‘Living well with dementia’ (Department of Health, 2009). I do, however, think it inappropriate to equate a multi-million pound intensely professionally marketed product, where the scripting of sessions is not only inflexible but also intransigent, with a ‘social movement’.

Measuring the wrong outcome is of course, whisper it, a cardinal sin. The ‘impact’ of dementia rights is not how many placards you can hold up saying you ‘like rights’ (in no way reversing the closure of law centres which happened around the time of the David Cameron Dementia Challenge 2012). It would, however, be relevant whether the national government listens to professional concerns over the alleged offences in the United Nations Convention on Rights for People with Disabilities (UNCRPD). Or whether the Care Quality Commission cares seriously about abuses in degrading treatment, privacy or liberty as actionable abuses of human rights.

I would like to suggest something now deeply politically incorrect now. You do need ‘experts’ to help make the case that ‘supported decision making’ for dementia might be abuse of the UNCRPD. Such arguments could be and should be coming from DAI as they negotiate policy at the world stage viz United Nations or World Health Organization.

Likewise, the success of empowerment and engagement cannot be necessarily gauged by the number of local groups run, the number of policy groups ‘influenced’ or the number of harmonised facilitation sessions executed according to strict guidelines. This for me is a triumph of market-led process over outcomes leading to the potential of high quality care.

I hope that you can find time to listen to our video above. It wasn’t “commissioned”, or “budgeted for”, and does not have “outcomes” which need “evaluating”, but it does convey the notion that some things fall outside of the scope of a dementia industry.

I have no doubt about the ‘feel good factor’ for these annual conferences. And I think it’s terrific that the #Dementia2020 organisers went out of their way a number of free places available. But these are the same speakers with the same tired messages with the same glaring omissions – for me only, but everyone’s different.

Here’s to a happy time for me earlier this year.

 

Enjoy!

Go, figure.

 

@dr_shibley

 

 

Share This:

A realistic discussion of the infrastructure of “dementia rights” is needed for powerful advocacy

Amidst the hullabaloo of social enterprises clambering to mount the bandwagon of the latest fad to make a quick commissioning buck in praise of ‘rights’, it’s easy to forget the actual importance of dementia advocacy services. I’ve long felt that the two biggest problems with ‘dementia friendly communities’ apart from the obvious concerns about ‘what is dementia?’ and ‘what is a community?’ is the concern that the dementia friendly communities and their powerful branding might be viewed as some cost neutral alternative to real local services, and the relationship between the State and the community remained poorly defined.

LBC presenter Shelagh Fogarty  (@ShelaghFogarty) yesterday asked a question to her audience, ‘What do you think is important in a community?’ You might not miss the shutting of a local butchers if an out of town supermarket opens up closeby, but you might miss a legal aid centre if you need to query some claim such as in the personal independence payment.

There is a meme circulating on Twitter at the moment that this photograph of dogs sitting round the board room table represents the ‘decision making body’ of laws about healthcare of cats. This was supposed to mock Donald Trump’s latest defeat about healthcare in the US Congress. This reminded me of how global dementia policy is framed for the most part by people already with substantial power and influence who don’t actually live beyond a diagnosis of dementia nor are care partners.

17457877_10155068817893076_5584078310908032080_n

The law can be an ass, and its problem is that it represents only source of rights; but within that, there are various often conflicting sources of rights.  As an advocacy tool, to say you have rights is important. Just look at Rosa Parks.

Civil rights activist Rosa Parks refused to surrender her bus seat to a white passenger, spurring the Montgomery boycott and other efforts to end segregation.

But it is the case that the law (and, more precisely, the State) considers itself ‘within its rights’ to deprive you of your liberty, under certain circumstances.  People beyond a diagnosis and care partners are crucially different in one aspect at least – they are not criminals, but coming to terms with a medical diagnosis.  The issue comes when certain features quite unique to dementia, such as loss of decision-making capacity, can interfere with the State’s decision to deprive you of your liberty. And views differ. Like most law, there are nuanced arguments, but it is my contention that placard or shroud waving about rights is not enough at a local level for this, although it is strongly desirable to imbue an ethos of ‘rights activism’. In a world where experts are largely derided and not invited into the committee rooms of revolving-door celebrity attendees of dementia policy decision-making, I feel it is rather important to understand where some of the problems have come from.

Centrally, the law domestically for us, the Mental Capacity Act, gives basic tenets relating to mental capacity. The MCA says (and this comes verbatim from the NHS Choices website):

    • Everyone has the right to make his or her own decisions. Health and care professionals should always assume an individual has the capacity to make a decision themselves, unless it is proved otherwise through a capacity assessment.
    • Individuals must be given help to make a decision themselves. This might include, for example, providing the person with information in a format that is easier for them to understand.
    • Just because someone makes what those caring for them consider to be an “unwise” decision, they should not be treated as lacking the capacity to make that decision. Everyone has the right to make their own life choices, where they have the capacity to do so.
    • Where someone is judged not to have the capacity to make a specific decision (following a capacity assessment), that decision can be taken for them, but it must be in their best interests.
    • Treatment and care provided to someone who lacks capacity should be the least restrictive of their basic rights and freedoms possible, while still providing the required treatment and care.

I’ve already provided a description of the rudiments of mental capacity law (and best interests) in my first book on dementia ‘Living well with dementia: the importance of the person and the environment” (CRC Press, 2014).

The Law Commission in their recent pamphlet (No 372) entitled “Mental Capacity and Deprivation of Liberty”, I felt, set out rather neatly the various problems with this area highly relevant to people living with dementia.

And this sentence from the pamphlet is striking, particularly when you consider the annihilation of dementia advocacy services which accompanied the David Cameron Dementia Challenge:

“It is not acceptable to continue with the current system where many people’s rights have become theoretical and illusory.”

The law has to be enforceable at all times, and yet the current situation of deprivation of liberty safeguards (DoLS) is not good. The official figures also show an increasing number of DoLS referrals being left unassessed and statutory time-scales being routinely breached; in England, only 43% of the 195,840 DoLS cases referred to local authorities for during 2015-16 were completed during the year, and of those only 29% were completed within the 21-day time limit set in regulations.

I should like to quote a case study from this pamphlet verbatim, under the conditions of the Open Government license, which shows for me how it is so essential to get this right for every individual involved. This concerns the case of London Borough of Hillingdon v Neary (Hillingdon LB v Neary [2011] EWHC 1377 (COP), [2011] 4 All ER 584).

“Stephen Neary was a young man with autism and learning disabilities. He lived at home with his father, with high levels of support services funded by Hillingdon Council. Steven lacked capacity to decide where or with whom he should live. In December 2009, his father reported to social workers that he was having difficulties coping. The local authority arranged for Steven to stay in a residential support unit. However, staff found Steven’s behaviour very challenging, particularly around food, and were concerned about him returning home. His father wanted him to stay for a couple of days but agreed to an extension of a couple of weeks in the expectation that Steven would then return home. In fact, the local authority kept Steven at the facility for a year, including a period when he was subject to the DoLS regime. The Court of Protection held that Steven had been unlawfully detained and ordered that he must return home to live with his father. The court noted, in particular, that the local authority did not properly discuss its concerns or its plans with Steven’s father, and that Steven expressed a desire to return home. The decision-making processes of the local authority were criticised by the court.”

As it stands, the DoLS are contained in schedules A1 and 1A to the Mental Capacity Act, added by the Mental Health Act 2007.  The DoLS aim to ensure that adults who lack capacity to consent to being accommodated in a hospital or care home for the purpose of being given care and treatment are only deprived of liberty if it is considered to be in their best interests. In simple terms, the DoLS do this by establishing an administrative process for authorising a deprivation of liberty and a means to challenge any such deprivation. The DoLS apply to all hospitals (including general hospitals and psychiatric hospitals) and care homes (including private care homes). They do not extend to deprivations of liberty in supported living, shared lives, and private and domestic settings. The DoLS provide that a hospital or care home (referred to in the legislation as the “managing authority”) must apply to the “supervisory body” for authorisation of a deprivation of liberty on their premises.

There are other problems, other than the sheer volume of cases. Many feel the DoLS exhibit a strange disconnect with the Mental Capacity Act: the Law Commission comment, “the DoLS are seen as incompatible with the style and empowering ethos of the Mental Capacity Act, to which they are attached. The two are often regarded as separate legislation with different legal and philosophical histories“.

There are a number of key recommendations made in the pamphlet, and these are worth noting as they will apply to some people living with dementia:

    • The DoLS should be replaced as a matter of pressing urgency.
    • The Liberty Protection Safeguards should be accompanied by the publication of a new Code of Practice which covers all aspects of the Mental Capacity Act.
    • The Liberty Protection Safeguards should enable the authorisation of arrangements which are proposed (up to 28 days in advance), or are in place, to enable the care or treatment of a person which would give rise to a deprivation of that person’s liberty.

It is worth noting that this will still have to contend with international law, and at the time of me writing this the UK government has no intention of withdrawing from the European Convention of Human Rights (ECHR) despite the imminent triggering of Article 50, commencing the official Brexit process.

In Convention law, a major instrument governing human right, Article 5(1) of the ECHR provides that no-one shall be deprived of liberty unless the deprivation is carried out in accordance with a procedure prescribed by law and is necessary in a democratic society on one of a number of grounds (including, notably, “unsoundness of mind”). Article 5(4) provides that everyone deprived of their liberty is entitled to take proceedings by which the lawfulness of their detention shall be decided speedily by a court, and their release ordered if the detention is not lawful. In summary then, the underlying aim of Article 5 is to ensure that no one is deprived of liberty arbitrarily.

But this is not the only Convention right at play. Article 8(1) provides that “everyone has the right to respect for his private and family life, his home and his correspondence”. The right is qualified, and State interferences with the various aspects of the right are permitted where they are in accordance with the law and necessary in a democratic society in the interests of, for example, the protection of health. This is yet another example of where ‘dementia rights’ do not exist in a vacuum, and while placard waving for marketing purposes has a function, it cannot possibly convey the real issues in the actual activation of rights comprising realpolitik.

I believe therefore in ‘dementia activism’, therefore, there should be practical operation of campaigning for rights. It is true that human rights are universal and inalienable, but also for people in England and Wales nobody is above the law (the ‘rule of law’). This is the practical heart of the issue, For example, on 19 March 2014, the Supreme Court handed down its judgment in “Cheshire West”. This was a conjoined appeal of two cases, P v Cheshire West and Chester Council and P and Q v Surrey County Council. I refer to this case in detail in my second book on dementia, published by Jessica Kingsley Publishers, “Living better with dementia: good practice and innovation for the future”.

Lady Hale, giving the leading judgment, held that human rights are the same for everyone: If it would be a deprivation of my liberty to be obliged to live in a particular place, subject to constant monitoring and control, only allowed out with close supervision, and unable to move away without permission even if such an opportunity became available, then it must also be a deprivation of the liberty of a disabled person. Indeed, many have been critical of the Supreme Court judgment in Cheshire West and
argued that it was wrong as a matter of law. I think the power of this controversial judgment, however, cannot be understated in the context of campaigning for ‘dementia rights’. In particular, the judgment undoubtedly “pushes to centre-stage the
understanding that human rights are universal and that what it means to be deprived of liberty must be the same for everyone, whether or not a person is disabled“, as indeed stated by the Law Commissioners.

Unfortunately, a recent draft of the new Welsh dementia strategy referred to the UN Convention on the Rights of the Child (see e.g. p.15), for reasons best known to them. However, the critical piece of legislation for anyone who has been following this for the last few years, pursuant to the excellent campaigning work of Prof Peter Mittler CBE and Kate Swaffer CEO of Dementia Alliance International is the  UN Convention on the Rights of Persons with Disabilities, which was ratified by the United Kingdom in 2009.

This Convention’s purpose (UNCRPD) is to protect the rights of people who have long-term physical, mental, intellectual, or sensory impairments. Whilst not directly incorporated into our domestic law, it is applied both by the Strasbourg and domesticcourts as an aid to interpretation of the ECHR, including by Lady Hale in Cheshire West. The legal instrument is in my view pivotal in the analysis of Deprivation of Liberty Safeguards, and, if properly applied, could be a powerful legal weapon for people living beyond a diagnosis of dementia. However, its operation in England and Wales is affected by the decimation of law centres which came roughly at the same time as the David Cameron Dementia Challenge, and, while it is fantastic that social enterprises are now maximising value through the advocacy of rights, it is surely not to be forgotten that the stripping away of legal protection of people with dementia and carers has been a very real crisis following the Legal Aid and Sentencing and Punishment of Offenders Act (2012). The swingeing cuts to social care allied mental health professionals and others have been exasperating in contradistinction to the slick social media marketing of ‘I’m alright with rights’.

There are two articles in the UNCRPD which I think can be used to uphold the rights of people with dementia in the jurisdiction of England and Wales. Interpretation of these articles must take into account the parlous state of support legal advocacy systems for people with dementia and care partners. This might depend, in part, on recent legislation from the Care Act (2014) (see SCIE link).

The first is Article 14.

The guidelines on article 14 of the Convention on the Rights of Persons with Disabilities concerning the right to liberty and security of persons with disabilities state:

“6. There are still practices in which States parties allow for the deprivation of liberty on the grounds of actual or perceived impairment. In this regard the Committee has established that article 14 does not permit any exceptions whereby persons may be detained on the grounds of their actual or perceived impairment. However, legislation of several States parties, including mental health laws, still provide instances in which persons may be detained on the grounds of their actual or perceived impairment, provided there are other reasons for their detention, including that they are deemed dangerous to themselves or others. This practice is incompatible with article 14; it is discriminatory in nature and amounts to arbitrary deprivation of liberty.”

The second Article worthy of note is Article 12.

Article 12 of the UN Convention on the Rights of Persons with Disabilities provides that disabled people are entitled to legal capacity on an equal basis with others in all areas of life. Crucially, Article 12(3) obliges State Parties to provide access to the support that disabled people may require in exercising their legal capacity. Legal capacity is not actually defined in the Convention and interjurisdictional legal differences will exist, but it can be understood as the construct which gives our decisions and transactions legal significance, how we give effect to our preferences and choices in the real world. The significance of Article 12 lays in its demand that disabled people, including must enjoy legal capacity on an equal basis with others. Article 12 of the CRPD requires ‘equal recognition before the law’ for disabled people and Article 12(2) demands that State Parties recognise that disabled people ‘enjoy legal capacity on an equal basis with others in all areas of life’.

The key to this as indeed the Law Commission discusses is the notion of ‘supported decision-making”: viz,

“The main impetus for supported decision-making schemes has been the UN Convention on the Rights of Persons with Disabilities. In particular, Article 12 (the right of disabled people to enjoy legal capacity on an equal basis with others) has been interpreted by the UN Committee on the Rights of Persons with Disabilities as indicating that national laws should provide support to people with disabilities to ensure that their will and preferences are respected, rather than overruled by action which is considered to be in the person’s objective best interests.”

A danger, some argue, is that Article 12’s wording may permit the continuation of guardianship-style systems based on substituted decision-making, and the continuation of substituted decision-making models could potentially undermine the transformative potential of the entire Convention.

So the Law Commission fudge it a bit:

“We share the aim of ensuring that the person is supported so as to be able to exercise their legal capacity, including through making their own decisions, although, as noted above, we consider that there are some situations in which it may nonetheless be necessary and proper to overrule the ascertainable wishes and feelings of a person lacking the mental capacity to make a particular decision or decisions.”

This is very different from the soothing image of people holding up placards.

Untitled-4

The upshot is that member states must provide the resources and infrastructure necessary to develop models of supported decision-making. If indeed the disability rights community can encourage State Parties to interpret Article 12 in a manner consistent with the aims of the CRPD then it has the potential to deliver real improvements for the lives of disabled people. Ideally, the Dementia Alliance International with the support of their partner organisation Alzheimer’s Disease International, in synergistic strategic alliance with the International Disability Alliance, can pool resources and competences with shared aims.

As the Law Commission note, precisely what the CRPD requires in relation to laws that deal with mental incapacity is still not entirely clear. They claim rather contentiously that there has even been some debate as to whether the Committee on the Rights of the Persons with Disabilities (the UN body which monitors implementation of the CRPD by States Parties) has sought to impose obligations that are not contained in the CRPD itself.

The Law Commission in summary propose the following to outline the potential incompatibility with Article 14 and with Article 5(1) ECHR.

“(1) The Liberty Protection Safeguards are unlikely to comply with Article 14 of the CRPD as interpreted by the UN Committee, which contends that any deprivation of liberty on the basis of a person’s actual or perceived impairment (even where there are other reasons, including their risk to themselves) amounts to unlawful deprivation of liberty.24 However, and as noted in the consultation paper, it is not on its face possible to comply with both Article 5(1)(e) of the ECHR and this interpretation of Article 14 of the CRPD. Moreover, we note that the underlying right to liberty contained in the International Covenant on Civil and Political Rights (which the CRPD is intended to ensure is enjoyed equally by all, regardless of disability) is interpreted in a manner much closer to Article 5(1)(e) by the UNHuman Rights Committee.
(2) Within the limits of our terms of reference, we have sought to draft legislation that is in the spirit of the CRPD. In particular, we have sought to ensure that wishes and feelings are given a particular weight in best interests decision-making by our recommended amendments to section 4 of the Mental Capacity Act. We havealso provided for a regulation-making power enabling  a supported decision-making scheme to be implemented.”

The take home message is that it now looks as if the Dementia Alliance International, with their advisor Prof Peter Mittler CBE, were right all along in emphasising the importance of the UNCRPD. I would go a step further in arguing that the UNCRPD holds the key for lobbying of national governments to ‘up their game’ on national dementia advocacy services, far beyond the rhetoric of ‘dementia friendly communities’ and the ‘marketing of rights’.

 

@dr_shibley

 

Share This:

Community based rehabilitation provides the vision in dementia care where weak words do not

The term “challenging behaviours” was a very unfortunate import from the field of intellectual disabilities to dementia, necessitating the query “for whom behaviours are ‘challenging’?” Many people with dementia find behaviours of the medical profession ‘challenging’, being polite.

But a ‘good import’, arguably, would be the notion of “Portage”.

The name Portage comes from the town of Wisconsin, USA where the a home teaching scheme was developed in the 1970’s.

Portage is a home visiting educational service for pre-school children with additional needs. These may be learning difficulties, developmental delay or physical difficulties.

The “Portage Home Visitor” works with parents in their home because young children initially learn best in the security of their own environment, with the people who know them. In this way the best teaching programmes can be developed for every child.

Interesting ‘success stories’ exist elsewhere in the world too.

Founded in the Netherlands in 2006/07, Buurtzorg is a unique district nursing system which has garnered international acclaim for being entirely nurse-led and cost effective.

Prior to Buurtzorg, home care services in the Netherlands were fragmented with patients being cared for by multiple practitioners and providers.

Ongoing financial pressures within the health sector have led to home care providers cutting costs by employing a low-paid and poorly skilled workforce who were unable to properly care for patients with co-morbidities, leading to a decline in patient health and satisfaction. This is a problem which England shares too.

Indeed, a recent report last week from the International Longevity Centre discussed again the significance of co-morbidities in dementia Buurtzorg’s solution has to give its community district nurses far greater control over patient care – a factor which it attributes as key for its rapid growth.

There is huge interest as to whether ‘the Buurtzog model’ can be adapted for the English system.

Until recently, neither persons with dementia nor national dementia societies had used their right of access to UN Convention on Rights for People with Disabilities to which they are legally entitled defined by the scope of Article 1.

“Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.”

Prof Peter Mittler CBE, Advisor for Human Rights for Dementia Alliance International, writes:

“At the recent WHO Ministerial Conference on Dementia, Kate Swaffer [Chair of Dementia Alliance International] set the ball rolling at the opening session by including ‘Access to CRPD’ as one of DAI’s demands.”

In addition, a robust, human-rights based resolution submitted by Alzheimers Disease International on behalf of 38 national Alzheimers Associations was reflected in the first of the General Principles of the Call for Action by WHO Director Dr Margaret Wang.

It was remarked that an aspiration should be that “policies, plans, programmes, interventions and actions are sensitive to the needs, expectations and human rights of people living with dementia and their caregivers“.

The concept of ‘post-diagnostic support’ (soothing, but in reality weak words for England’s policy in dementia) needs to be re-configured as a rehabilitation pathway.

Essential to the re-framing of the whole discussion is getting rid of the idea that ‘post diagnostic support’ is a haphazard AFTER THOUGHT – and that the medical model is KING through the strategic placement of ‘diagnosis’. Sure, without the diagnosis, nothing further can happen, but the issue is that even with the diagnosis some people are experiencing next to nothing in care in England, and even if they experience some care it is fragmented and disjointed.

There is no better introduction into how the sequelae of the dementia diagnosis can be so positively destructive than Kate Swaffer’s own description of ‘prescribed disengagement™’ in a prominent journal here.

This pathway begins possibly even at the time of contemplation of the diagnosis with extensive support to after when the diagnosis has been given. At all times, the recipients of that diagnosis (including immediate closest) should be opportunities to ask questions and discuss ways in which care and/or support can be given.

Enablement should be the goal now.

Other jurisdictions, for example Queensland in Australia, have been outstanding in leading – see this report, for example, here.

Recent, rather limp words recently even seemed to miss out ‘caring well’ altogether – making English policy on this close a bit strange to put it mildly.

A ‘pathway’ is a somewhat cranky technocratic word, and could be considered entirely inappropriate in the context of an English government intent on cutting state provision of a ‘safety net’. But at best it might provide decision points which might be legitimately and reasonably expected at points in a personal integrated care and support plan following diagnosis.

The lack of national adoption of pathways, entirely due to entirely political reasons, and despite a plethora of evidence to prove pathways can promote health and wellbeing for patients with dementia and carers, has been noteworthy here in England, tragically.

Notwithstanding, a rehabilitation pathway would provide access to a wide range of specialists. These might include, for example, the following personnel, no one part of the ‘workforce’ being “more important” than others, promoting independence as part of an inclusive, accessible community for all.

People with dementia and those closest to them themselves have an important rôle to ply in co-designing pathways in genuine co-production, if they are working on an equal and reciprocal basis.

Specialist clinical nurses who can act from the point of diagnosis providing continuity of care are important are sufficient in themselves. They are especially helpful in applying palliative care principles. For too long, it has been dismissed that dementia is a terminal condition, thus denying many people with dementia equitable access to palliative approaches.  Furthermore, it has been insufficiently addressed that people with dementia have a right to the highest standards of health from the NHS, regardless of setting.

These trained clinical nursing specialists are also extremely well placed to sort out issues arising from co-morbidities in health and illness, helping to head off avoidable acute admissions to hospital, or premature inappropriate transfer to residential care. Admiral nurses are also pivotal in helping coping strategies, essential in averting ‘crises’ in dementia care.

Other specialists might include:

  • Occupational therapists are pivotal, I feel; this rôle could include wider implications of he diagnosis and a discussion possible adaptations to the home and domestic appliances, and various forms of technology and innovations. A particular challenge, for example, might be to negotiate higher order problems in processing of the senses, including vision, as per posterior cortical atrophy.
  • Physiotherapists to maintain mobility and promote physical exercise.
  • Speech and language therapists to promote language and communication, especially important in Alzheimer’s disease and temporal forms of frontotemporal dementia, as well as to ensure safe swallowing following particular vascular events.
  • Clinical neuropsychologists to advise on adjustment to diagnosis, improving and maintaining cognitive functioning, promoting thought diversity and an ‘assets based approach’ where people’s skills can be best utilised.
  • Dieticians: a healthy diet is relevant in the progression of dementia, and especially so arguably for vascular dementia and Alzheimer’s disease. Also, latterly, particular attention has been given to optimising eating environments as part of the ‘healthy eating’ ethos.
  • Social workers are much utilised in my opinion, and I should like to see a much wider rôle than in safeguarding or crises, though I think capacity building in the workforce of social workers with a specialist interest in mental health issues might be helpful. I think social work practitioners are vital in the promotion of wellbeing, in enabling and protecting people with dementia, and provide access to community resources perhaps including personal budgets for some,
  • Pharmacists. Many medications can worsen cognitive symptoms potentially and act as risk to physical health indeed, and inappropriate polypharmacy needs to be reviewed by specialists in pharmacy.

Certainly medical professionals in primary and secondary care are vital where another plank of integration is needed, to ensure people with dementia and their closest genuinely do get the right care in the right time at the right place. I have no doubt primary care, with their wide experience of medicine, and upholding a proactive stance too, would be vital in community based rehabilitation, including general practitioners. But the current service issues in resources for, recruitment to, excessive regulation of, and access to general practitioners in England cannot be ignored.

The UN 2016-2030 Sustainable Development Goals were launched with a commitment to “Leave No One Behind”, a similar theme having been ‘no decision about us without us’. I have a concern that the poorly named “dementia friendly communities”, being aimed at being politically inoffensive by the chief cheerleaders in England, and being so cost neutral, does not do enough to resolve social inequalities in reality.

We know this is a danger, say, for housing. But worldwide extrapolation of inequity would be disaster, particularly when we consider the number of people thought to be living with dementia in low and middle income countries around the world.

All too easily ‘dementia friendly communities’ can become a strapline as a sticking plaster for cuts elsewhere in the Big Society, to secure a quickie competitive advantage in marketing – this is indeed addressed in this briefing from March 2015 here:

“There have been concerns that the target created incentives for governments to focus on‘low hanging fruit’ rather than those most in need.”

As a consequence of sustained advocacy, persons with disabilities are now clearly included in the 17 SDGs and 169 implementation indicators. Although the needs of older persons are recognised, persons with dementia are in grave risk of being overlooked.

It is likely that, if Big Pharma are successful in producing orphan drugs capable of being regulated and distributed, there will be an inequity regarding domestic recommendations about making these drugs available. The ‘economics of rescue’ doctrine means that there should be no stone unturned in providing medications in palliative care; but NICE will have other views on the greatest benefit for the largest number of people in their econometric ullitarian cost-benefit analysis.

It is indeed likely that persons with dementia in Low and Middle Income Countries should be able to benefit from the long established WHO Community-Based Rehabilitation (CBR) Programme described here.

“Community-based rehabilitation (CBR) was initiated by WHO following the Declaration of Alma-Ata in 1978 in an effort to enhance the quality of life for people with disabilities and their families; meet their basic needs; and ensure their inclusion and participation. While initially a strategy to increase access to rehabilitation services in resource-constrained settings, CBR is now a multisectoral approach working to improve the equalization of opportunities and social inclusion of people with disabilities while combating the perpetual cycle of poverty and disability. CBR is implemented through the combined efforts of people with disabilities, their families and communities, and relevant government and non-government health, education, vocational, social and other services.”

As a clear example as what could be achieved by engaging trained professionals too into English dementia policy, the Royal College of Physicians of London have been leaders too.

See this interesting case study:

“This Future Hospital Programme case study describes how the Torbay and South Devon NHS Foundation Trust is fulfilling their aim of achieving stroke rehabilitation 7 days a week in both the Stroke Rehabilitation Unit and surrounding areas.”

Stroke care, like cancer care, is in a different place to dementia.

And we know why. The only hope in English policy appears to be some chosen ones selectively adding fertiliser to a few flowers blooming when the entire garden had actually been devoid of being watered for several years. And this needs fixing the gardener.

Unfortunately, people who are less skilled – but who are ‘advising’ or ‘supporting’ – might possibly insufficient alone to service needs of people living with dementia and carers, even if they meet the needs of certain charities, but they do serve a useful function in service provision. Quality is essential for enablement.

 

 

Please come to see my talk in the policy stream of the Alzheimer’s Disease International conference this week in Budapest.

Share This: