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Decisions in different types of dementia

Decisions are fundamental to our lives.

Decision making is a fundamental and complex skill which is crucial at any age. We all have to face decisions regarding their health care, medical treatment, retirement, housing, transport, and finances, for example.

We not only have to consider the benefit of a decision for their current living situation, but also to anticipate the consequences of decisions of such actions in the nearer and farer future. We need to hold the decision in my memory for long enough to think through strategically the options, and be able to action an outcome.

Everyday life requires numerous and fast decisions. Often these decisions have an uncertain result. Wrong decisions may thus have severe consequences in several domains.

Disturbances in an ability to make decisions or to anticipate the possible consequences of decisions can result in massive problems.

In the last decade in cognitive neuroscience and cognitive neurology, there has been an increasing interest to investigate neural basis of decision-making abilities and disturbances both in healthy subjects and to people where there has been some disruption.

But we have been able to build up a coherent picture of this using neuropsychological and neuroimaging techniques.

An assessment of cognitive deficits in neurodegenerative diseases has focused so far almost entirely on memory, language, attention, visuospatial perception and executive functioning (Gleichgerrcht et al., 2010).

In the past decade, however, the study of decision-making in these conditions has increased, prompting the development of new tasks that have enabled this cognitive process to be readily assessed. In clinical practice, it is not uncommon to find early persons with behavioral-variant frontotemporal dementia (bvFTD) who, to a considerable extent, are intellectually unimpaired, while relatives and caregivers depict a strikingly different picture: they claim that these patients show severe changes in their behaviour and real-life decision-making skills (e.g. Rahman et al., 1999; Manes et al., 2011).

The literature has so able to identify the orbitofrontal, anterior cingulate, and dorsolateral prefrontal cortices as being critical to decision-making (Rosenbloom, Schmahmann and Price, 2012).

A schematic view of the important neural substrates proposed by Rahman and colleagues (Rahman et al., 2001) is shown in Figure 1.

TICS

Rahman and colleagues showed that patients with behavioural variant frontemporal dementia exhibited a profile of risk-taking, not impulsive, behaviour in decision-making, suggestive of dysfunction in the ventromedial prefrontal or orbitofrontal cortex. Kloeters and colleagues (Kloeters et al., 2013), fourteen years later, published results showing that atrophy in the orbitofrontal cortex and amygdala correlated with performance on the Iowa Gambling Task used in their study to examine decision-making.

A large proportion of human cognitive social neuroscience research has focused on the issue of decision-making thus far.

Impaired decision-making is a symptomatic feature of a number of neurodegenerative diseases, but the nature of these decision-making deficits depends on the particular disease.

Once you’ve met one person with dementia, you’ve met one person with dementia. Each person with dementia will have a cognitive profile according how far progressed the condition has reached, and the extent to which functional problems are perceived. This might depend on the likely diagnostic category in which a patient living with dementia finds himself or herself.

Examining the qualitative differences in decision-making impairments associated with different neurodegenerative diseases provides potentially valuable information regarding the underlying neural basis of decision-making.

A good account of decision-making in different neurological conditions including dementia is provided by Brand, Labudda and Markowitsch (2006).

Figure 2 shows a schematic view of some of the key processes.

 

Final picture for ch 13

The features of their model are as follows.

General problem solving strategies, also stored in long-term memory, need to be recalled in order to evaluate which strategy seems to be appropriate in order to decide advantageously. The recall of this information, including personal autobiographical experiences and general strategies that have been developed during life, is triggered and controlled by executive components, for example cognitive flexibility.

In working memory, the features of the current decision and the retrieved information from long-term memory are combined to generate or initiate a current decision strategy that guides the decision.

In this process, “somatic markers”, which means biasing signals from the body or mental representations of them, can also guide the selection of an appropriate strategy. The decision itself leads to positive or negative feedback (e.g., gain or loss of a specific amount) that activates an bodily autonomic response.

The feedback – or the somatic markers, which are the results of the emotional feedback – can also result in an alteration of the information stored in long-term memory as well as – in a more direct way – the representation of somatic markers associated with comparable decisions.

The comparison of the profiles of decision making in different conditions, which can cause dementia, are arguably helpful in predicting what the person with dementia might expect. Several studies have reported altered decision-making in Parkinsons’s disease (Perretta et al., 2005) and pathological gambling has been found in Parkinsons’s disease patients with L-Dopa medication (Weintraub et al., 2006) attributing a key role to the chemical dopamine in taking risky decisions.

Recent studies also investigated decision-making in Huntington’s disease and found that learning and memory processes, rather than motivational processes, are responsible for decision-making deficits in this group (Busemeyer and Stout, 2002).

Hampton and O’Flaherty (2007, some years ago, mapped out the neural substrates of reward-related decision making with functional MRI. They identified that the combined signals from three specific brain areas (anterior cingulate cortex, medial prefrontal cortex, and ventral striatum) were found to provide all of the information sufficient to decode subjects’ decisions out of all of the regions studied.

These findings appear to implicate a specific network of regions in encoding information relevant to subsequent behavioral choice. Evidence for the important role of the orbitofrontal cortex and the amygdala in decision-making particularly under ambiguous conditions comes from a recent study by Hsu and colleagues (Hsu et al., 2005)).

Dementia of the Alzheimer type (DAT), the cause of the most cases of dementia worldwide, is typically characterised by typical structural, neurochemical and cognitive changes as the disease progresses.

Pathological changes in mild DAT affect primarily the medial temporal lobes and limbic structures (e.g., entorhinal cortex, hippocampus), and then extend to the association cortices of the frontal, temporal and parietal lobes (Braak and Braak, 1991).

Ha and colleagues have argued that the changes in DAT fundamentally alter the frames of reference for making decisions (Ha et al., 2012).

The study by Delazer and colleagues further highlighted important differences in decision-making between mild DAT patients and healthy controls (Delazer et al., 2007). Findings from the study by Sinz and colleagues are consistent with the notion that decisions under ambiguity as well as decisions under risk are impaired in mild DAT (Sinz et al., 2008). It may thus be expected that patients with mild DAT have difficulties in taking decisions in everyday life situations, both in cases of ambiguity (information on probability is missing or conflicting, and the expected utility of the different options is incalculable) and in cases of risk (outcomes can be predicted by well-defined or estimable probabilities).

The legal instrument to assess capacity through the Mental Capacity Act (2005) is very blunt. Characterising an ability of a person living with dementia to make optimal decisions is essential for giving confidence to that person (and those closest to him and her) that such risks are being managed appropriately.

It is likely that the implementation of the Mental Capacity Act will come under increasing scrutiny, in parallel with advances in decision-making research in cognitive neuroscience and cognitive neurology.

 

References

Braak, H., Braak, E. (1991) Neuropathological staging of Alzheimer-related changes, Acta Neuropathologica (Berl), 82, pp. 239–259.

Brand, M., Labudda, K., Markowitsch, H.J. (2006) Neuropsychological correlates of decision-making in ambiguous and risky situations, Neural Netw, 19(8), pp. 1266-76.

Busemeyer, J. R., Stout, J. C. (2002) A contribution of cognitive decision models to clinical assessment: Decomposing performance on the Bechara gambling task, Psychological Assessment, 14, pp. 253–262.

Delazer, M., Sinz, H., Zamarian, L., Benke, T. (2007) Decision-making with explicit and stable rules in mild Alzheimer’s disease, Neuropsychologia, 45(8), pp. 1632-41.

Gleichgerrcht, E., Ibáñez, A., Roca, M., Torralva, T., Manes, F. (2010) Decision-making cognition in neurodegenerative diseases, Nat Rev Neurol, 6(11), pp. 611-23.

Ha, J., Kim, E.J., Lim, S., Shin, D.W., Kang, Y.J., Bae, S.M., Yoon, H.K., Oh, K.S. (2012) Altered risk-aversion and risk-taking behaviour in patients with Alzheimer’s disease, Psychogeriatrics, 12(3), pp. 151-8.

Hampton, A.N., O’Doherty, J.P. (2007) Decoding the neural substrates of reward-related decision making with functional MRI, Proc Natl Acad Sci U S A, 104(4), pp. 1377-82.

Hsu, M., Bhatt, M., Adolphs, R., Tranel, D., Camerer, C. F. (2005) Neural systems responding to degrees of uncertainty in human decision-making, Science, 310, pp. 1680–1683.

Kloeters, S., Bertoux, M., O’Callaghan, C., Hodges, J.R., Hornberger, M. (2013) Money for nothing – Atrophy correlates of gambling decision making in behavioural variant frontotemporal dementia and Alzheimer’s disease, Neuroimage Clin, 2, pp. 263-72.

Manes, F., Torralva, T., Ibáñez, A., Roca, M., Bekinschtein, T., Gleichgerrcht, E. (2011) Decision-making in frontotemporal dementia: clinical, theoretical and legal implications, Dement Geriatr Cogn Disord, 32(1), pp. 11-7.

Rahman, S., Sahakian, B.J., Hodges, J.R., Rogers, R.D., Robbins, T.W. (1999) Specific cognitive deficits in mild frontal variant frontotemporal dementia, Brain, 1999, 122 (Pt 8), pp. 1469-93.

Rosenbloom, M.H., Schmahmann, J.D., Price, B.H. (2012) The functional neuroanatomy of decision making, J Neuropsychiatry Clin Neurosci, 24(3), pp. 266-77.

Sinz, H., Zamarian, L., Benke, T., Wenning, G.K., Delazer, M. (2008) Impact of ambiguity and risk on decision making in mild Alzheimer’s disease, Neuropsychologia, 46(7), pp. 2043-55.

Weintraub, D., Siderowf, A. D., Potenza, M. N., Goveas, J., Morales, K. H., Duda, J. E., Moberg PJ, Stern MB. (2006) Association of dopamine agonist use with impulse control disorders in Parkinson disease, Archives of Neurology, 63, pp. 969–973.

 

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Stigma in dementia poses crucial questions for dementia friendly communities

The literature on stigma is comprehensive.

But Kate Swaffer added to it beautifully in the journal ‘Dementia’, with an article today – on open access – entitled “Dementia: Stigma, language and dementia friendly”.

Kate refers to a blogpost by Ken Clasper, a Dementia Friends Champion, which asks, sensibly, what we are trying to achieve with more ‘awareness’.

Brilliant

And if you scroll down to the end of this tour de force on stigma and dementia, you’ll see exactly why Kate is able to opine with such legitimacy and authority.

Kate S

I conceded a long time ago – in March 2014, in fact – on this blog that the policy plank of ‘dementia friendly communities’ is an incredibly complex one.

The discussion of stigma seems to be one of perpetuity. We’ve seen numerous attempts at it, including the original work of Goffman (1963) on stigma and ‘spoiled identity’.

It’s been re-incarnated as a Royal College of Psychiatrists campaign on stigma.

This morning there was another bite of the cherry.

The report, New perspectives and approaches to understanding dementia and stigma, published by the think tank International Longevity Centre UK (ILC-UK) is produced by the MRC, Alzheimer’s Research UK, and Alzheimer’s Society; it was also supported by Pfizer.

I’ve thought how I could possibly respond to Kate. And I can’t, as Kate is in every sense of the word an ‘expert’.

But it did get me thinking.

It got me thinking of the happy times I had with Chris and Jayne last week at the Alzheimer Europe conference in the city of my birth in Glasgow.

‘There’s more to the person than the diagnosis” is one of the key five messages of ‘Dementia Friends’, an initiative from the Alzheimer’s Society predominantly (and Public Health England). This is mirrored in a tweet by Chris from this morning.

CRTWEET

Chris is also a “Dementia Friends Champion“, and lives well with dementia.

Last week, I attended a brilliant all-day workshop chaired by Karishma Chandaria, Dementia Friendly Communities manager for the Alzheimer’s Society. The progress which has been made on this policy plank is substantial, and I am certain that the next Government will wish to support this policy initiative in the English for 2015-20.

Karishma

It is stated clearly in Simon Stevens’ “Five Year Plan” for NHS England.

5 year plan

It is a core thread of the Prime Minister’s Dementia Challenge.

And the ‘coalition of the good’ has seen the dementia friendly communities policy plank develop drawing on work from ‘Innovations in dementia’ and the Joseph Rowntree Foundation.

And to give the Alzheimer’s Society credit, where it is certainly due, there has been launched an open consultation for a British Code of Practice (currently ongoing), to which anybody can contribute.

But this code of practice does, again, have the potential to be very divisive. It might be painful to make dementia friendly communities, such as the large one in Torbay, ‘fit into this box’.

Torbay in many ways is a beacon of innovation for integration between NHS and care. There is genuine “community bind”, with citizens, shopkeepers, transport, police, for example, contributing.

The article on the BBC website about Norman McNamara (January 2012) predates the Prime Minister’s Dementia Challenge, (which started in March 2012.)

Any top down way of making bottom-up social groups ‘conform’ will be hugely problematic in the implementation of this approach to dementia-friendly communities, potentially.

The methodology of dementia friendly communities has to be truly inclusive: it is all or nothing.

I agree with Kate, and like her I wish to avoid protracted circular definitions of ‘stigma’. For me, I recognise stigma when you see it, like how the Supreme Court of the US recognises erotica and pornography as per Jacobellis v Ohio [1964].

It is possibly easier to define stigma by its sequelae, such as avoiding wishing to talk about dementia in polite conversation, or not wishing to see your GP about possible symptoms of a dementia in its early stages, or not wanting to socialise with people with dementia who happen to be in your family.

We know these are real phenomena, as demonstrated, for example, by the loneliness of many people on receiving a diagnosis of possible dementia.

And we know stigma can harbour deep-seated irrational prejudice, like the incorrect notion that dementia is somehow contagious like a ‘superbug’.

Stigma can be exhibited in pretty nasty ways in language: such as “snap out of it” or “victim”.

My discussion of whether people living with dementia are ‘sufferers’  tends to go round and round in circles with people who disagree with me.

Suffice to say, I agree it is possible for a person living with dementia, such as a person who has received a diagnosis of Lewy body dementia and who has to put up with terrible “night terrors” and exhaustion the following day.

I think if you live independently, but with full insight into your symptoms, it can be exasperating. I have never been in that position though, and it would be invidious of me to second-guess.

I think if you are close to someone in the latter stages of dementia, you can suffer.

But I’ve written about this all, indeed on this blog, before here.

The only thing that is new is Peanuts’ cartoon (original citation here).

Peanuts on suffering

In that workshop, I also sat through Joy and Tone Watson’s brilliant “Dementia Friends” session. Joy lives with dementia. And their session was brilliant.

This was the final ‘exhibit’.

Joy

I attended a special group session on stigma with Toby Williamson from the Mental Health Foundation during that day. In that session, it was mentioned that ‘rôle models’ of people living well with dementia might help to break down stigma.

Or maybe guidance for the media might help? One cannot help wondering if an article such as in the Daily Mail today might actually put off people from seeking a diagnosis of dementia (completely unintentionally).

But I did bring up something on my mind.

“Stigmata” literally means signs.

But dementia can be, like other disabilities, quite invisible.

Somebody might have insidious change in personality and behaviour, noticed by somebody closest to him or her, with no obvious changes in cognition (nor indeed in investigations).

I showed this in my paper published in Brain in 1999, currently also in the Oxford Textbook of Medicine.

The condition I refer to is in fact one of the more prevalent causes of dementia in the younger age group, called the “behavioural variant of frontotemporal dementia“.

If the signs are ‘visible’, then you are obliged legally to make reasonable adjustments for any disability. In England, this includes dementia under the guidance to the Equality Act (2010).

As Toby Williamson says, if you’re obliged to build a ramp for somebody in a wheelchair for a place of work, there’s an equal obligation to produce adequate signage for people who have navigation problems as a result of a dementia such as dementia of the Alzheimer’s type.

There are reams and reams of evidence on equality and the built environment (for example the Design Council or Commission for Architecture and the Built Environment).

I personally think it’s brilliant you can go into certain shops, and the customer-facing staff will, potentially, be able to recognise if a person does need time and space to pay for items.

This is also been tackled in the Scottish jurisdiction through Alzheimer Scotland.

Also, corporate lawyers should be advising large employers about the scope for unfair dismissal claims by people dismissed as they are about to arrive at a diagnosis of dementia (particularly young onset dementia).

The timeline is roughly this. Somebody has health problems – he or she is invited to leave and given a pay off – these health problems turn out to be a diagnosis of probable dementia – by this time the dismissal is not unfair.

I feel confident the ‘dementia friendly communities’ policy strand in England, and across other jurisdictions, is here to stay. I share, though, Kate’s concerns that about the relative ease with which this policy has lifted off, say, compared to how one might feel about ‘gay friendly communities’ or ‘black friendly communities’. One has to be extremely careful about any policy plank which alerts people to divisions, “them against us”.

This is what I know best as the “don’t think of elephants phenomenon” and then you think of elephants.

This policy, anyway, currently has huge momentum. Marc Wortmann is  currently Executive Director of Alzheimer’s Disease International (ADI), the organisation providing a global voice for dementia and the founder of World Alzheimer’s Month. Wortmann has been instrumental in propelling dementia friendly communities to the foreground of world policy.

But, in firing up ‘dementia friendly communities’ (a term which I think is sub-optimal’), v 2.0, there is plenty of time to get it right.

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Specialist nurses should form part of the post-diagnostic care and support network for living well with dementia

Background: There have been numerous concerns that the health and care system in England is too fragmented, and lacks sufficient focus for a person with dementia or caregiver to navigate through the system.

A complex array of health and social care services is needed to support people living with dementia; “carers find navigating systemic issues in dementia care time-consuming, unpredictable and often more difficult than the caring work they undertake.”(Peel and Harding, 2014).

One of the “pillars” of the Scottish strategy invokes a “dementia practice coordinator“.

This rôle is: “a named, skilled practitioner who will lead the care, treatment and support for the person and their carer on an ongoing basis, coordinating access to all the pillars of support and ensuring effective intervention across health and social care”.

There are a number of possible professions which might be involved in this care coordinating role: for example, GPs taking a proactive approach to their patients, or social care practitioners who might have particular expertise in safeguarding issues (e.g. Manthorpe et al., 2007).

The Alzheimer’s Society suggest a “dementia adviser” role.

In this framework, the dementia adviser service would be ‘primarily for people with dementia, as well as their supporters and carers. It provides them with a named contact throughout their journey with dementia. Referrals to the service may come from GPs, CMHTs or other health and social care professionals, or self-referral.’

It is interesting to note that such a rôle was described clearly in the 2009 Department of Health English strategy document for dementia policy: “Living well with dementia”:

2009

Clinical nurse specialists (CNS) in cancer perform a range of complex activities, including the management of care.

Recent evidence from the University of Southampton suggests that a properly trained and educated dementia specialist nurse, undertaking a clearly defined role, and working directly with people with dementia and their carers for a significant proportion of the time, could benefit people with dementia in hospitals. If these benefits addressed only a fraction of the excess stays experienced by people with dementia, a significant return on investment could be obtained.

CNS who practise proactive case management and refocus services in line with best practice represent a good return on investment (Leary and Baxter, 2014).

Recently, calls have been made to expand a pioneering dementia pilot in Norfolk after an almost £110,000 investment resulted in more than £400,000 savings for health and social services in less than a year.

The meaning of the term ‘timely diagnosis’ in dementia has recently come under close scrutiny.

For example, Dhedhi, Swinglehurst and Russell (2014) state that: “Reluctance or failure to make a diagnosis on a particular occasion does not necessarily point to GPs’ lack of awareness of current policies, or to a set of training needs, but commonly reflects this range of nuanced balancing judgements, often negotiated with patients and their families with detailed attention to a particular context.”

The  Carers Trust has been working with the Royal College of Nursing to adapt the Triangle of Care to meet the needs of carers of people with dementia when that person is admitted to a general hospital. This approach, which has gathered some momentum in English policy, puts the person living with dementia in a ‘triangle of care’  in a ‘triangle of care’ with professional and carer (see page 6).

There is clearly a potential rôle for a third sector charity, such as Dementia UK, in providing clinical nursing specialist input. The success of Macmillan Cancer in the ‘prime contractor’ model for integrating cancer and end-of-life care in Staffordshire, as an example of outcomes-based commissioning, is, arguably, a very good recent paradigmatic example.

Aim: To conduct a preliminary online survey into citizens’ attitudes to what post-diagnostic support in the English jurisdiction could look like.

Methods: 87 respondents completed the online “Surveymonkey” survey, invited from a Twitter account with around 12000 followers. The survey could only be completed once.

You were invited to be a person who had just received a diagnosis of dementia in the English jurisdiction.

Exclusions: None.

Results:

Q1. By far, the most preferred option was to go to see your General Practitioner with a view to receiving, if correct, a diagnosis of early dementia, if you’d noticed a decline in your memory and been aware of a public campaign on dementia (47%); talking about your concerns with your friends or family, to see what they suggest, was the next preferred option (34%).

Q1

Q2. This was extremely finally balanced. One option was most preferred (38%), that of staying with your GP, but attending for the next couple of years regular six-monthly meetings with a hospital neurologist to observe follow-up with CPN support; but only just, as staying with your GP, who can help organise care and support for you and your closest consisting of a multidisciplinary team, was the next preferred option (36%). The option to stay with your GP, but ring up a local charity helpline to see what they can suggest to help you, regarding information and life choices, was the least preferred (26%).

Q2

Q3. The option where a clinical nursing specialist had been added incrementally to a speech and language therapist and clinical psychologist was by far the most popular option (72%).

Q3

Q4. The option where you initiated follow-up for post-diagnosic support following diagnosis as soon as possible, relatively in 2017, was by far the most popular option (92%).

Q4

Q5. Three options were given for who the ‘care coordinator’ could be. A clinical nursing specialist was by far the most preferred option (48%), then ‘dementia adviser’ from a well known charity (33%), and then the GP last (19%).

Q5

The rôle of the ‘dementia adviser’, particularly at the earlier stages of the condition at least, is clearly worth considering in future policy such as the English dementia strategy 2015-20.

Q6. This question asked who you would like the most to organise your care plan with you: your primary caregiver was the most popular choice (44%), with a clinical nursing specialist the next popular choice (36%).

Q6

Q7. Here it was introduced that a clinical nursing specialist was one of the options in the new English dementia strategy (2015-20). The rationale for this, most felt, should come from clinical outcomes (76%), then financial considerations from the funding situation of the NHS and care (14%). The option where powerful lobbying from charities (“third sector”) should be the driver for specialist nurses was the least preferred (10%).

Q7

Discussion: The results confirm previous anecdotal reports of the need for timely post-diagnostic support following ‘timely diagnosis’.  They paint a picture of a person who has become aware of dementia awareness campaigns and noticed possible symptoms in himself wishing to trust to see a General Practitioner to receive a diagnosis. On receipt of that ‘timely diagnosis’, he or she would be keen to initiate post-diagnostic support as soon as possible, with a multidisciplinary team; it is striking that a clinical nursing specialist was preferred to the rôle of the ‘dementia adviser’ from a charity previously mooted; and that the decision in policy to implement clinical nursing specialists should be made on the basis of clinical outcome, not financial pressures in which the NHS and care find themselves. Notwithstanding that, the results support heavily a ‘triangle of care’ involving a caregiver and a professional, such as a person living with dementia, in the formation of a personalised care plan.

Limitations: There are no geographical data of the locations, or other demographic data, of the respondents to this online survey. Responses might be biased by the nature of the Twitter threads which had invited respondents to participate, or the nature of the followers of those threads. The questions assume a working knowledge of what the key personnel in a multidisciplinary team for dementia care and support do.

Although respondents were advised to select one of the options, however inadequate the options were, it is a limitation of this study that options did not include social care practitioners. Social care practitioners will, however, have a critical rôle in dementia post-diagnostic care and support.

Conclusions: The findings taken together provide important considerations for future policy-makers regarding post-diagnostic support for dementia in the English jurisdiction, urging the need for a rôle for clinical nursing specialists in delivering prompt post-diagnostic support and in avoiding, on the basis of clinical need, inappropriate care in hospitals.

 

Selected readings

Carers Trust/Royal College of Nursing. (2013) The triangle of care. Carers Included: A Guide to Best Practice for Dementia Care

Dhedhi SA, Swinglehurst D, Russell J. (2014) ‘Timely’ diagnosis of dementia: what does it mean? A narrative analysis of GPs’ accounts, BMJ Open, Mar 4, 4(3):e004439.

Leary A, Baxter J. (2014) Impact of lung cancer clinical nurse specialists on emergency admissions, Br J Nurs, Sep 25, 23(17), pp. 935-8.

Manthorpe J, Clough R, Cornes M, Bright L, Moriarty J, Iliffe S; OPRSI (Older People Researching Social Issues). (2007) Four years on: the impact of the National Service Framework for Older People on the experiences, expectations and views of older people, Age Ageing, Sep, 36(5), pp. 501-7.

Peel E, Harding R. (2014) ‘It’s a huge maze, the system, it’s a terrible maze’: dementia carers’ constructions of navigating health and social care services. Dementia (London), Sep, 13(5), pp. 642-61. d

 

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The 24th Annual Conference for Alzheimer Europe put people with dementia in the driving seat. Deservedly so.

The biggest dementia conference to be taken place in Scotland (“Conference”, attended by 800 professionals, people with dementia and carers) was held in Glasgow last week (20-23 October 2014).

The focus of the conference was Dignity and autonomy in Dementia and the four day event explored in quite some detail how recognising the human rights of people with dementia, their carers, partners and families is key to ensuring dignity and respect, as well as overcoming stigma.

It was the 24th Annual Conference of Alzheimer Europe (@AlzheimerEurope, an umbrella organisation of 36 Alzheimer associations from 31 countries across Europe), supported this year by Alzheimer Scotland, .

The timetable was exacting.

The people there were very special; for example Tommy Whitelaw (@TommyNTour) mentioned in Alex Neil MSP’s speech at the conference. Tommy and Irene Oldfather (@IreneOldfather) happened to be passing through during one of my poster sessions.

2 Tommy N Tour

And Beth Britton (@BethyB1886).

Beth-AlzEurope

Well done to the conference organisers for putting it together, especially Gladwys Guillory.

timetable

The main conference hall of the venue, the Crowne Plaza in Glasgow, the Argyll Suite, was majestic.

I particularly liked the ‘live Twitter feed’ at the front of the hall, where curiously Kate Swaffer (@KateSwaffer) appeared many times all the way from Australia. Here I am appearing with my ‘selfie’, with somebody well known in the foreground of the photograph.

Selfie

The relative failure of the medical model in addressing the needs of people with dementia and caregivers was a pervasive theme throughout the whole conference.

medical modelmedical model 2

I had a nice chat with Marc Wortmann (@marcwort) over one of the lunches. Marc is in charge of all aspects of ADI’s work (ADI = Alzheimer Disease (and associated conditions) International; @AlzDisInt). Collaborating with the Board, Marc implements finance and campaign strategies.

Marc represents ADI at international conferences and in the NCD Alliance and takes part in WHO and UN meetings. I was also able to bump into Jean Georges (@JeanGeorgesAE), the Executive Director of Alzheimer Europe.

Marc Wortmann

Cabinet Secretary for Health, Alex Neil, delivered a clear keynote speech to the conference at the Tuesday morning plenary session, in which he paid tribute to the immense contribution of Tommy Whitelaw.

Key to the event was the signing of the Glasgow Declaration: a commitment to promoting the rights, dignity and autonomy of people living with dementia across Europe, as guaranteed in the European Convention of Human Rights and the Universal Declaration of Human Rights.

Glasgow Declaration

Here’s a great slide of ‘s “PANEL” (pic taken by ).

PANEL

The satellite symposium sessions were well put together, and attracted substantial audiences.

There was an amazing moment when Agnes Houston (@Agnes_Houston), Chair Scottish Dementia Working Group, said to Helga Rohra (@ContactHelga), the Chair of the satellite session and Chair of European Persons With Dementia, “All we people with dementia need is a bit of help — AND A BIT OF TIME!

A quotation from Agnes – from a previous conference – says it all for me.

w4.ppt

Agnes and Helga

The audience burst out laughing.

The reason for this is that Agnes had been originally timetabled to have more time for her slot, apparently.

As the conference was themed around the law, including human rights, invariably discrimination against people with dementia came up in various forms.

human rights

I asked about the topic several times.

One talk of the entire programme which I thought was truly outstanding was PL1.3. Gráinne McGettrick (Alzheimer’s Society of Ireland): The UN Disability Convention as an instrument for people with dementia and their carers.

2 Grainne

In the English jurisdiction, dementia can count as a disability; therefore there are statutory requirements for ensuring dementia-friendly communities from employers. Also, unfair dismissal of a person on account of being newly diagnosed with dementia will clearly be unlawful.

A member of the audience politely pointed out to me afterwards that a person normally gets sacked first, and then gets his or her diagnosis of dementia confirmed much later, so at the point of dismissal the dismissal does not obviously appear unfair legally.

I found this observation incredibly insightful, as there have been thus far no ‘test cases’ of unfair dismissal on grounds of a diagnosis of dementia in the English jurisdiction.

disabilities

I had brought along my book ‘Living well with dementia’, but I rarely got a chance to read (or refer) to it during the course of the whole week!

Living well with dementia

I asked several times why there is no representative of persons living with dementia or caregivers on the World Dementia Council (@WorldDementia). The background to this fiasco is explained here.

I had designed that I would be staying in the same competitively-priced hôtel as Jayne Goodrick (@JayneGoodrick) and Chris Roberts in Glasgow for the 24th Alzheimer Europe conference held in Glasgow, the city where I was born.

It was by chance we gave a lift to Dr Ruth Bartlett (@RuthLBartlett) to the conference venue. Ruth was staying, as it turns out, in the same competitively-priced hôtel.

Ruth is of course well known for her well respected contributions about the citizenship of of people living with dementia, and how this has influenced the ‘involvement’ of people with dementia in policy.

This was us just before the opening ceremony – when we were full of energy.

I really enjoyed speaking with Geoff Huggins (@GeoffHuggins), who gave an excellent speech in the opening ceremony.

Geoff Huggins

I presented my talk on how dementia healthcare would not be best served by a private insurance system, because of the potential problems of ‘moral hazard’ and genetic discrimination.

This talk was, overall, well received.

1 Shibley and talk

I was particularly pleased with the wide-ranging, excellent discussion we had after my talk. Thanks especially to Amy Dalyrymple (@Amy_Dalyrymple), Head of Policy for Alzheimer Scotland, whose contributions in all areas of policy were particularly interesting. The work currently being implemented in Scotland represents a culmination of very high quality inclusive work through a number of different stakeholders.

I was also honoured to present two further research posters, which I had co-authored on the perception and identity of the G8 conference.

1 Shibley and poster

 

Chris Roberts (@mason4233) helped me with the poster session. It was in fact Chris who identified that the phrase “living well with dementia” was not used even once in the top 75 web articles on #G8dementia on Google, in about 44000 words odd.

1 Chris and poster

All around the conference were people whose work is directly relevant to my book: for example Silke Kammer – on the arts and music – and Emma Killick (@RealEmmaKillick) who at the excellent MacIntyre leads on children and adults with learning disabilities and/or autism, but is clearly passionate about people with learning disabilities who later have further unaddressed needs on receiving a diagnosis of dementia.

It was terrific to bump into followers everywhere I went. It was great to meet Julie Christie (@juliechristie1) for the first time, whose work on resilience I am much interested in. It was also lovely to see Anna Tatton (@annatatton1) doing so well.

I am well aware of why the Scottish dementia nursing strategy, some say, has become the ‘envy of the world’. It was a huge privilege to meet in person Janice McAlister (@JaniceMcAlister), who was BJN Nurse of the Year Elderly Care 2013. In addition, I found the presentation by Hugh Masters (@HughCMasters), Associate Chief Nursing Officer for the Scottish Government, interesting for insights as to how England might improve its service too.

HM

I happened to meet in the foyer of the Crowne Plaza on Monday night Ann Pascoe, @A_Carers_Voice, somebody who I have not only liked a lot on Twitter, but whose work on rural ‘dementia-friendly communities’ I have massively respected for some time.

Ann Pascoe

Likewise, it was really nice to catch up with Caroline Bartle (@3SpiritUKNZ), who very kindly once did an infographic of my book ‘Living well with dementia’.

infogram

I met in the poster session Prof Mary Marshall to whom the Stirling School in design in dementia owes a huge amount. I owe a huge amount to Prof Marshall too, as the Notting Hill masterclass which I once attended got me first interested in this subject a few years ago (I had a long chat with Prof Marshall there.)

1 Mary Marshall

There were not idle tokenistic sops to people living with dementia, and their closest ones, in the whole conference. They were at all times integral to the fabric of the conference.

For example, the seating arrangements in the main Argyll conference suite reflected the special respect given to people with dementia and those closest to them.

opening ceremony

The substance of the conference for the most part was of an exceptionally high standard in policy; there was next to no shilling of commercial projects.

The work from Alzheimer Scotland (@alzscot), including, predictably, the work focused on autonomy and dignity, and human rights, was showcased in an impressive way. Their work hangs together as a coherent, forceful narrative of meaningful significance for the Scottish jurisdiction.

It also has clear implications for how England conducts itself south of the border, notably, for example, in a right to timely diagnosis, and a right to timely care and support (including proper coordination of care and support).

care practitioner

In common with Scotland, England is trying to tackle hard the inappropriate use of antipsychotics. Dr Karim Saad (@KarimS3D) gave an excellent talk on this subject, drawing on recent findings from the ALCOVE2 study.

Karim

Scotland, in fairness, seems to be having less trouble with its policy than England is.

eruption

There was a very good sprinkling of cutting-edge research relevant to all practitioners in the field.

caregiver burden

For me, the conference had the feeling of a happy wedding without any of the arguments.

Here are Agnes and Donna.

Donna and Agnes

Whilst originally ‘unkeen’, I ended up having a wonderful time at the “Gala Dinner”. The entertainment – traditional Scottish music and dance – was amazing.

gala dinneragnesgdGala dinner 2

I was able to chat with Agnes and Nancy for some time. What a joy.

Elaine Hunter (@ElaineAHPmh) gave an excellent presentation on the transformative changes which had happened around the workforce in Scotland, including leadership from allied health professionals.

Elaine Hunter

Without doubt, a skilled workforce for the provision of dementia services is essential, not gimmicks.

1 Skilled workforce

I consider Helga to be a true friend too. Meeting Helga was akin to being wowed by Lady Gaga.

Helga and Shibley

I had last felt like this when I met Norman McNamara (@norrms) at the Queen Elizabeth II centre in London, Westminster.

I learnt a lot from the all-day workshop on building dementia friendly communities.

Over lunchtime, Joy Watson gave a brilliant ‘Dementia Friends’ (@DementiaFriends) session. I, in fact, was total awe as I am also a ‘Dementia Friends Champion’, and discovered many tips how to run my sessions in future!

1 DF Watson

This is a brilliant film exhibiting the passion which Joy puts into her Dementia Friends sessions.

Karishma Chandaria (@Karishma1000) chaired this exceptional day’s workshop, called a ‘masterclass’ on dementia friendly communities, which indeed mentioned the code of best practice for dementia friendly communities currently under consultation.

1 Karishma and best practice

Chris Roberts made time to hand out flyers for membership of the ‘Dementia Alliance International‘, an unique campaigning group run wholly by people living with dementia.

Chris DAI

This Conference mapped topics clearly onto people living with dementia and caregivers, for which the organisers of this event must be heavily congratulated.

Next year’s Conference will be in Slovenia. I’ll be there! Bring it on!

Slovenia

 

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Transforming dementia care is long overdue. Specialist clinical nurses in dementia are now vital.

In the G8dementia, particularly by large corporate-like charities, dementia has been compared to the cancers. Whilst there are many problems with this comparison medically, the aim is for research and service expectations to be met in dementia on an equal footing to those for cancer. There are different types of dementia and different types of cancer, and there is, according to NICE, no current treatment for Alzheimer’s disease, the most common type of dementia globally, which slows the progression of disease. The aim however is undeniably a laudable one. In terms of service provision, the hope is that medical conditions can be detected early (and not at the last minute), and over time care and support can be introduced and implemented in a non-panicky way. The low hanging fruit is for providers at the front end of the service to game the NHS QOF/CQUIN system to design ‘innovative’ packages which might diagnose certain forms of dementia, such as the profound short term learning and memory problems in early Alzheimer’s disease. But getting out of this ‘quick fix’ mentality is going to be essential for the long-term sustainability of dementia services in England I feel. I believe strongly that clinical nursing specialists would not just be a big help here: they are indeed vital. England will really benefit from senior people in dementia taking the bull by the horns, in keeping with a refreshing approach to the long term conditions (LTCs) in general, as helpfully described by the King’s Fund in this policy pamphlet from 2010.

But I have now spoken to two very senior specialist clinical nurses in the NHS. One who has been at the heart of policy for nursing in the last few years, and the other one who has been at the heart of one of the top clinical firms in cognitive disorders here in London for a few decades. They both said exactly the same thing to me: “What we’re fed up about is the fast turnover of services and personnel within them. It’s difficult to find the same person twice. And we’ve got too many people signposting services, and not enough people providing frontline care.” There is undoubtedly a rôle for a trained person who can help to navigate a person with dementia and his or her caregivers around a profoundly complicated system. I’ve heard that “dementia advisers” can be brilliant at a local level, but can easily come to the limits of the skills they can sometimes offer. The system is too bitty and disorganised at the moment; and persons with dementia (some of whom who become ‘experts by experience) and caregivers have a key rôle in optimising design of service and revision provision for dementia in the future.

As a person progresses along “a dementia journey”, a term itself which attracts some considerable criticism, his or her own needs will tend to change from living well independently with dementia to benefiting from increasing levels of support, and then increasing levels of care. Two big events could happen along this ‘journey’: the loss of decision-making ability (mental capacity), and the preference to move into a residential home of sorts. The timing of these events can be very hard for people with dementia or their caregivers to predict. There can also be worsening problems in communication between people with dementia and those closest to them, including friends and family. If a person living with dementia needs suddenly to enter hospital as a ‘crisis’ at 4 in the morning, he or she might be blue-lighted in with an infected full bladder causing a deterioration in cognition and behaviour, without a care plan in sight.

Diagnosing dementia is clearly not enough, but a timely diagnosis can be helpful. Professional physicians, nurses and other staff will always consider their professional including moral obligations in how likely the diagnosis is, how much a person wants the diagnosis, and how much to investigate a possible diagnosis. And there are too many cases of the possible diagnosis being given in a busy clinic, often summarised as an ‘information pack’; at worst, some people lost to the system for years before anything new happens.

It is likely that England will develop ‘integrated care organisations’. This does not involve building new departments and new buildings, but is a shift in organisational mindset such that GPs with a specialist skill in dementia service provision can work alongside other trained professionals and caregivers, with the person with dementia. This ‘working together’ is nothing new. It has been brilliantly described in the policy work of the Carers’ Trust in their recent documents ‘A triangle of care’ and ‘A road less rocky’. Caregiving can be intensely rewarding, but can also be hard work with caregivers having specific needs of their own. Caregivers will also be at the very heart of any personalised care plans. A professional who might be involved is a speech and language therapist. There is a national shortage of experienced speech and language therapists which is a tragedy as some forms of dementia, for example logopenic primary progressive aphasia, might be characterised by substantial problems in language in the relative absence of problems in domains such as episodic memory.

As a dementia progresses, a clinical psychologist will be in a brilliant position to work out why a person might have practical problems in real life due to identifiable problems in thinking, such as planning. A planning problem might be manifest as a person being able to make a cup of tea, or to organise a planning trip. Or, a clinical psychologist will be able to tell a team that what appeared to be an optician-related matter with eyesight is in fact a higher order perceptual problem as found in the rarer posterior cortical atrophy type of dementia (where memory can be normal early on.) An occupational therapist can use his or her own expertise here. Whichever way you look at it, dementia service provision needs are likely to be met from clinical teams who are an integral part of the ‘dementia friendly community’, who have been somewhat disenfranchised out of the conversation so far compared to high-street customer-facing corporates. Professionals, even in the context of meeting their regulatory obligations, have, I feel, a massive rôle to play in providing personal communities even if they do not assume legal duty of care. It is now known that activities can not only enhance wellbeing, but can also possibly slow the rate of progression (although the evidence base for this finding is not particularly robust yet.)

In the last few years, since the Health and Social Care Act (2012), was introduced, there has been massive turmoil in the National Health Service (NHS), leading at worst to fragmented services resulting from slick pitches from well funded private providers unable to deliver on their contracts. And yet if the NHS were given the correct management and leadership skills, they could be at the heart of providing world class care in dementia. Economies of scale, with free knowledge transfer, can be advantages of large organisations. Given that there are a million people in the next few years living with dementia, the NHS should be planning ahead for this, not just counting the number of new diagnoses as a manifestation of glorified bean-counting. The drive to diagnosis has been a classic example of where the target has become the means to an end in itself.

Earlier this year in July 2014, it was reported that cancer care in the NHS could be privatised for the first time in the health service’s biggest ever outsourcing of services worth over £1.2bn. The four CCGs were involved, which care for 767,000 patients, are also seeking bidders for a separate £535m contract to provide end-of-life care. Whoever wins the cancer contract will then have to “transform the provision of cancer care in Staffordshire and Stoke”. The prime provider will “manage all the services along existing cancer care pathways” for the first two years after which “the provider will assume responsibility for the provision of cancer care, in expectation of streamlining the service model”, according to details posted by the CCGs on the main NHS procurement website.

Macmillan Cancer Support were able to bring clinical nursing specialists (CNS) to the table: the “Macmillan nurses”. This robust model, which had proper financial backing, has proven to work extremely well in the cancer setting (some details are here). A massive contribution of the CNS is widely thought has been thought to be the “proctive case management”, and not only is this is sound clinical sense but could in the long run save the NHS millions, averting emergency hospital admissions which have been pre-empted. The case for proactive case management has also been established in other neurological conditions such as multiple sclerosis. CNS have been described well for the community, but also have a rôle to play in hospitals. Indeed, continuity of care between the community and hospital will be vital, not least because people living with dementia can find unfamiliar people and physical environments extremely distressing. Warrington has seen the introduction of designs which put people living with dementia at ease and the valuing of specialist trained staff. The service provision there is a beacon of success, and shows what can be done if the NHS has a vision and motivation to succeed in this.

CNS could have been a pivotal component of the answer given to Lorely Burt, Liberal Democrat MP for Solihull, this week to the Prime Minister in the weekly PMQs. But it sadly was not.

dementia sufferers

Clinical nursing specialists, including the well respected “Admiral nurses” from the ‘Dementia UK’ charity, have been recognised as being crucial to developing world class care in dementia too here from our own English nursing strategy. Over 4o00 have signed a petition for more Admiral nurses on the internet. A much under-reported item of research from the Centre for Innovation and Leadership in the Health Sciences at the University of Southampton, established improved clinical outcomes and significant return on investment from CNS in dementia. Again, work in progress suggests that the proactive case management approach has a lot to offer here. A paper from Prof Steve Iliffe and Prof Jill Manthorpe and colleagues is particularly noteworthy here. The beneficial impact of CNS in averting emergency admissions is being well described for cancer by Prof Alison Leary, Chair of Healthcare and Workforce Modelling, and colleagues (see, for example, here). If in the next five-year English dementia strategy there is a strong commitment to flagship clinical integrated services with well established and respected clinical nursing specialist models implemented, this could really revolutionise dementia service provision. And it’s now becoming increasingly that commonalities in what works well, especially in relation to involving caregivers, is working across a number of LTCs. This is a golden opportunity for senior policy specialists in dementia to put the emphasis on sustainable models of care rather than shiny box gimmicks, and to design a system which will be of real benefit to patients with dementia and their closest ones.

 

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The World Dementia Council will be much stronger from democratic representation from leaders living with dementia

There is no doubt the ‘World Dementia Council’ (WDC) is a very good thing. It contains some very strong people in global dementia policy, and will be a real ‘force for change’, I feel. But recently the Dementia Alliance International (DAI) have voiced concerns about lack of representation of people with dementia on the WDC itself.  You can follow progress of this here. I totally support the DAI over their concerns for the reasons given below.

“Change” can be a very politically sensitive issue. I remember going to a meeting recently where Prof. Terence Stephenson, later to become the Chair of the General Medical Council, urged the audience that it was better to change things from within rather than to try to effect change by hectoring from the outside.

Benjamin Franklin is widely quoted as saying that the only certainties are death and taxes. I am looking forward to seeing ‘The Cherry Orchard” which will run at the Young Vic from 10 October 2014. Of course, I did six months of studying it like all good diligent students for my own MBA.

I really sympathise with the talented leaders on the World Dementia Council, but I strongly feel that global policy in dementia needs to acknowledge people living with dementia as equals. This can be lost even in the well meant phrase ‘dementia friendly communities’.

Change can be intimidating, as it challenges “vested interests”. Both the left and right abhor vested interests, but they also have a strong dislike for abuse of power.

I don’t mean simply ‘involving’ people with dementia in some namby pamby way, say circulating a report from people with dementia, at meetings, or enveloping them in flowery language of them being part of ‘networks’. Incredibly, there is no leader from a group of caregivers in dementia; there are probably about one million unpaid caregivers in dementia in the UK alone, and the current direction of travel for the UK is ultimately to involve caregivers in the development of personalised care plans. It might be mooted that no one person living with dementia can ever be a ‘representative’ of people living with dementia; but none of the people currently on the panel are individually sole representatives either.

I am not accusing the World Dementia Council of abusing their power. Far from it, they have hardly begun to meet yet. And I have high hopes they will help to nurture an innovation culture, which has already started in Europe through various funded initiatives such as the EU Ambient Assisted Living Joint Programmes (“ALLADIN”).

I had the pleasure of working with Prof Roger Orpwood in developing my chapters on innovation in my book “Living well with dementia”. Roger is in fact one of the easiest people I’ve ever worked with. Roger has had a long and distinguished career in medical engineering at the University of Bath, and even appeared before the Baroness Sally Greengross in a House of Lords Select Committee on the subject in 2004. Baroness Greengross is leading the All Party Parliamentary Group on dementia, and is involved with the development of the English dementia strategy to commence next year hopefully.

Roger was keen to emphasise to me that you must listen to the views of people with dementia in developing innovations. He has written at length about the implementation of ‘user groups’ in the development of designs for assistive technologies. Here’s one of his papers.

My Twitter timeline is full of missives about or from ‘patient leaders’. I feel one can split hairs about what a ‘person’ is and what a ‘patient’ is, and ‘person-centred care’ is fundamentally different to ‘patient-centred care’. I am hoping to meet Helga Rohra next week at the Alzheimer’s Europe conference in Glasgow; Helga is someone I’ve respected for ages, not least in her rôle at the Chair of the European Persons with Dementia group.

Kate Swaffer is a friend of mine and colleague. Kate, also an individual living with dementia, is in fact one of the “keynote speakers” at the Alzheimer’s Disease International conference next year in Perth. I am actually on the ‘international advisory board’ for that conference, and I am hoping to trawl through research submissions from next month for the conference.

I really do wish the World Dementia Council well. But, likewise, I strongly feel that not having a leader from the community of people living with dementia or from a large body of caregivers for dementia on that World Dementia Council is a basic failure of democratic representation, sending out a dire signal about inclusivity, equality and diversity; but it is also not in the interests of development of good innovations from either research or commercial application perspectives. And we know, as well, it is a massive PR fail on the part of the people promoting the World Dementia Council.

I have written an open letter to the World Dementia Council which you can view here: Open letter to WDC.

I am hopeful that the World Dementia Council will respond constructively to our concerns in due course. And I strongly recommend you read the recent blogposts on the Dementia Alliance International website here.

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My research on #G8dementia and on markets for the @AlzheimerEurope conference 2014

I will be presenting two posters on attitudes amongst the general public towards the ‘G8 dementia’ event as it was then.

I was aghast that out of 75 web articles that the phrase “Living well with dementia” wasn’t used once.

There was a huge bias towards the medical model of dementia. Respondents overwhelmingly felt that the major beneficiaries of that event were large charities, politicians and Pharma, and the people who benefited least were the actual persons living with dementia and caregivers.

Slide1

Slide1

I am honoured to give one of the oral presentations.

Information asymmetry between insurance provider and person is a big source of problems. I will showing preliminary data that the two phenomena “moral hazard” and “adverse selection” are likely to be demonstrated in attitudes of people who had received  a genetic diagnosis of dementia.

However, I will be raising awareness of the danger of a policy based purely on genetic risk and private insurance; without safeguards against genetic discrimination, such a policy would be likely massively to disadvantage individuals with a higher family-based risk of dementia.

Plate 1

Plate 2

Plate 3 Plate 3

Plate 4

 

I am hugely grateful to my Twitter followers for taking part in my online surveys.

I am, finally, hugely grateful to the individuals living with dementia and caregivers, as well as other members of the public, who continue to drive the work that I do in dementia.

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Developing an enhanced person-centred speech and language service for persons living with PPA dementia

Ravel, composer of ‘Bolero’, who died in 1937, is thought in retrospect to have lived with PPA dementia.

The direction of travel is to develop a person-centred service for people living with dementia and their closest including primary caregivers.

There is still much interest in demonstrating beneficial outcomes, despite the scarcity of resources.

Reports are currently that speech and language input not only can improve communication in people living with PPA, but can improve wellbeing for all involved.

The current NICE guidelines (2011) make it clear that speech and language therapists have a vital role in assessment and management for people with communication difficulties as a result of dementia.

Yesterday, it was very nice to go to the PPA Support Group, this time hosted at UCL off Gower Street.

I was there with my friend Charmaine Hardy whom I had first met on Twitter through Beth Britton.

CHSH

The “team” is here.

Team

(Picture by Susie Henley.)

Members of the Queen Square cognitive disorders service are known to me.

Giovanna Mallucci, Jason Warren and Nick Fox were all my Specialist Registrars there – on Prof Martin Rossor’s firm – when I was the equivalent of a FY2 Doctor more than a decade ago. They now are all currently Professors (Jason and Nick at the National Hospital for Neurology and UCL Institute of Neurology).

I had a long chat with Katy Judd, the highly experienced specialist nurse on this firm. I have memories of Katy being completely wonderful. And she was wonderful yesterday. For me, there was a huge deal to catch upon.

The PPA newsletter, containing details of their activities, is here.

Anna Volkmer is a specialist speech and language therapist, from the prestigious South London and the Maudsley NHS Trust.

AV

(Picture by Charmaine)

Anna is on a crusade to go from raising funds for much needed research to developing an innovative, and very much needed, service.

Anna gave a very clear presentation of her research looking at the efficacy of therapy techniques in PPA. A questionnaire survey had revealed that there was much interest in local specialists.

Sessions before the therapy were recorded. Each session was about one hour long.

The aims of therapy for each person and caregiver were different and tailored to the individual.

For example, Anna gave an example of Mr and Mrs G. Mrs G had reported much frustration with her difficulty in communicating, and her perception that Mr G ‘didn’t wish to listen any more’.

Persons with dementia (Frontotemporal Dementia- Primary Progressive Aphasia type) who have been assessed by the St Thomas’ memory clinic team (in the South London and Maudsley NHS Trust) and been referred to a highly specialist speech and language therapist.

The evidence to date had suggested that single word therapies focusing on rehearsal and semantic tasks are most likely to support maintenance of communication for people with PPA (e.g. Jokel, Rochon & Leonard, 2006).

Intervention focused on identifying communication breakdown between the person living with PPA and their communication partner using video-feedback.

One member of the audience described how he had accompanied his wife, living with PPA dementia, to a specialised speech and language unit in Chicago. This unit is apparently world-renowned, known to Anna. The delegate’s experience had been extremely positive.

Anna will be presenting at the British Aphasiology conference later this year, and has a long standing interest in PPA , having written and published on the subject.

Anna’s book on PPA – which she mentioned in the Q&A session – is here.

We then sat around in round table discussions, focused around subtypes of PPA.

Charmaine and I were on the ‘logopenic PPA’ table.

The initial characterisations of a “logopenic” (from Greek, meaning “lack of words”) presentation of PPA described an overall paucity of verbal output, with relative sparing of grammar, phonology, and motor speech,

More specialised information about this type of PPA – meant for a specialist audience – is here.

We discussed various aspects.

One was how it would be a great idea to involve friends or family early on, to help with communication with services from an early stage.

We also discussed how good it was to capture communication intervention techniques on video, so that analysis could also be conducted for non-verbal communication.

We discussed how both hospital and bome settings could be useful for such ‘roll out’ of the service. More research was needed how many sessions there could be, what the time intervals between each session might be, and how early on in the condition the service should take place.

A number of families had had access to speech and language services. The ‘quality’ of such services varied in style and content.

It was observed that speech and language therapists often were keen to administer tests rather than to build up a person-centred or relationships-centred rapport. However, Charmaine Hardy described how her husband had been investigated using an extensive biography approach. Charmaine is on Twitter (@charbhardy), and her profile states indeed her husband, whom she cares for too, lives with PPA dementia.

We talked about how the numbers of people living with PPA dementia were few in number in disparate localities, but how expertise could be pooled for the benefit of persons and families. Our group felt that a coherent PPA information provision, strategy, perhaps organised in both a generic and an individualised person-centred way, could be enormously helpful in service provision.

It was felt that one hour was long, possibly a bit too long provided there was an adequate number of ‘breaks’; but delegates on my table emphasised that each person was different.

 

 

 

References

Jokel, R., Cupit, J., Rochon, E. and Leonard, C. (2009) Relearning lost vocabulary in nonfluent progressive aphasia with MossTalk Words. Aphasiology 23 (2) 175 -191.

National Collaborating Centre for Mental Health commissioned by the Social Care Institute for Excellence National Institute for Health and Clinical Excellence (revised 2011) CG 42.

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You need risk to live well with dementia

“Risk” is one of those entities which bridges the financial world with law and regulation, psychology or neuroscience.   The simplicity of the definition of it in the Oxford English Dictionary rather belies its complexity? risk definitions

It was a pivotal part of my own Ph.D. in the early diagnosis of the behavioural variant of frontotemporal dementia, awarded by the University of Cambridge in 2001. I was one of the very first researchers in the world to identify that ‘risk seeking behaviour’ is a key part of the presentation of many of these individuals, against a background of quite normal other psychological abilities and investigations including brain neuroimaging scans.

‘You need to break eggs to make an omelette’ is one formulation of the notion that you have to be able to make mistakes to achieve an overall goal. That particular sentence is, for example, used to convey the way in which you might have to put up with ninety nine turkeys before striking gold with one truly innovative idea. ‘Nothing ventured nothing gained’ is another slant of a similar idea. Interestingly, this phrase is often attributed to Benjamin Franklin. Franklin has an established reputation of his own as a ‘conceptual innovator‘.

omelette

It’s also a very interesting policy document on risk in dementia from the UK Department of Health, from 10 November 2010, a really useful contribution. This guidance was commissioned on behalf of the Department of Health by Claire Goodchild, National Programme Manager (Implementation), National Dementia Strategy. The guidance was researched and compiled by Professor Jill Manthorpe and Jo Moriarty, of the Social Care Workforce Research Unit, King’s College London.

Prof Alistair Burns, England’s clinical lead for dementia, has written a very focused and relevant Foreword to this piece of work. Here Alistair is, pictured with me earlier this week at the Dementia Action Alliance Annual Conference hosted in Westminster, London (“DAA Conference”). The event was a positive celebration of the #DAACC2A, “Dementia Action Alliance Carers’ Call to Action”, which embodies a movement where, “carers are acknowledged and respected as essential partners in care, and are supported with easy access to the information and the advice they need to assist them in carrying out their role.”

ABSR

Risk enablement, or as it is sometimes known, positive risk management, in dementia involves making decisions based on different types of knowledge. However, people living with dementia and caregivers, quite often an eldest child or spouse, can handle risk in different ways. I feel that understanding living well with dementia is only possible through understanding the background to a person living with dementia, and his or her interaction with the environment. I’ve indeed written a comprehensive book on it, and I am in the process of writing a second book on it, which brings under the spotlight many of the key stakeholders, I believe, who contribute to “dementia friendly communities”.

Risk enablement is based on the idea that the process of measuring risk involves balancing the positive benefits from taking risks against the negative effects of attempting to avoid risk altogether. For example, the report cites the example of the risk of getting lost if a person with dementia goes out unaccompanied needs to be set against the possible risks of boredom and frustration from remaining inside. There are clearly various components of risk which might affect a person living with dementia. Risk engagement therefore becomes a constructive process of risk mitigation, an idea highly familiar to the law and regulation through the pivotal thrust of ‘doctrine of proportionality‘, that legislation must be both necessary and proportionate.

Risk enablement, it is argued, goes far beyond the physical components of risk, such as the risk of falling over or of getting lost, to consider the psychosocial aspects of risk, such as the effects on wellbeing or self-identity if a person is unable to do something that is important to them, for example, making a cup of tea. Therefore, the report proposes that “risk enablement plans” could be drawn up which summarise the risks and benefits that have been identified, the likelihood that they will occur and their seriousness, or severity, and the actions to be taken by practitioners to promote risk enablement and to deal with adverse events should they occur. These plans need to be shared with the person with dementia and, where appropriate, with his or her carer or caregiver. Thus advancing the policy construct of ‘personalisation’ offering choice and control, risk assessment tools are envisaged by the authors to help support decision making, and should include information about a person with dementia’s strengths and of his or her views and understanding about risk. Risk could apply to making a cup of tea, or going for a walk. We know that people living with dementia handle risks in different ways. For some people, a person living with dementia excessively walking beyond a local jurisdiction might be a known problem. For all the different causes of dementia medically, and for all the different ways in which individuals react to a dementia at different stages of the condition, a person can live with dementia in a sharply distinctive way.

Risk therefore in a hugely meaningful and substantial way has moved away from the “safety first” circles? And it fundamentally will depend on how an unique person living with his or her dementia embraces the environment in reality.

environment

The idea that you need risk to live well with dementia is brought into sharp focus here by Chris Roberts, a friend of mine, speaking at the DAA Conference. I have recently begun to take risks in a highly enjoyable game for my #ipad3, which Chris indeed introduced me to, called, “Real Racing 3”. Here, Chris also talks about the crass way in which he was originally told his diagnosis, and lack of information about his condition given at the time of diagnosis. Therefore, Chris, I feel, brings into sharp focus a number of problem areas, which hopefully Baroness Sally Greengross and colleagues will address in a new five year strategy for England for 2015-20.

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Is there more to influencing English dementia policy than putting up a poster?

Now is the time to influence the new English dementia strategy. It is critically important that the informed opinions of a diverse group of stakeholders are involved in framing this policy.

As with any strategy document, it will be hard to be in full control of all of the facts and evidence, but I feel it’s very important that the views of people living with dementia are taken into account. This is not just a case of ‘involving’ people living with dementia where possible. It’s a case of allowing people living with dementia to lead in framing the narrative. I am not going to suggest what these topics might be. I think, for people with more advanced dementia, it is going to be important to listen to the views of carers, both unpaid and paid. There is currently a huge policy problem that the needs of carers themselves are unaddressed. Carers need to be better supported in a more structured way.

There has also been a problem rumbling on years: that people who’ve received a diagnosis of dementia are not signposted to appropriate services. While the job description of ‘dementia adviser’ was mooted, I don’t feel this goes nearly enough. The ‘Dementia Challengers’ website, through amazing personal efforts from its one-person designer who has personal experience of this field, offers useful leads on support for making informed choices for living well with dementia. There is no escaping the overwhelming desire, also, to see a system of specialist nurses participating in a care system.  Also, we are not making use of the substantial expertise of social work professionals. For issues such as advocacy over capacity and liberty, there are certain people with dementia who need to have equitable access to such resources.

I am a card-carrying signatory that each person living with dementia has an unique experience. I’ve even written a book on it. But it might help people with certain types of dementia to be reassured that there are clinicians with expertise in dementias, and can promote certain support groups (such as the excellent PPA Support Group). We need any diagnosis of dementia to be correct. I too often hear of people being given a diagnosis from somewhere, on the basis of a very scanty work-up. I understand the concerns that too many people are being denied of a correct diagnosis, but we must ensure that this part of the system is adequately resourced. It is possible there will be a breakthrough in drug development for the dementias in the near future. I wish the people working on this well. I am sure that they will not wish resources to be diverted disproportionately into this away from current care, or making it appear that the current living well of people with dementia is less of a priority?

The ‘dementia friendly communities’ policy plank is potentially fruitful. However, I think we should address how we hear a lot from corporates, but not much, in this jurisdiction, from professionals and practitioners who could be useful members of that community. Under the current legislative framework, both in domestic and international law, the rules of equality and human rights apply. These are not issues only for the ivory towers. They have direct relevance to the person with younger onset dementia who finds himself in an unfair dismissal situation. They also have relevance to the person in the badly run care home who feels (s) he is subject to “degrading treatment”.  Access to the law has been a real setback for the current Government, as has been access to see your GP. These create the perfect storm for a ‘dementia unfriendly community’.

I am the last person to denigrate the efforts of the vast army of people putting up posters, signing petitions, or handing out leaflets, in the name of ‘dementia awareness’. There is a huge danger that these posters, petitions and leaflets send out a message of ‘mission accomplished’, if there is no follow up? But I am likewise a bit burnt that the fact that #G7dementia and “Prime Minister’s Dementia Challenge” appeared from nowhere, and had the effect of threatening plurality in the dementia third sector.  I am concerned about this, and now is the time to make views known to the Baroness Sally Greengross, Chair of the All Party Parliamentary Group, Prof Alistair Burns, the clinical lead for dementia in England, and Prof Martin Rossor, lead for research for dementia for NIHR.

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