Tag Archives: Copyright: Dementia Alliance International 2016

Day 2 at the United Nations in NYC

Screen Shot 2016-06-16 at 5.43.07 PMDAI Member Mary Radnofsky has been sending journal like entries reporting on her time at the United Nations event in New York City. Whilst I suspect we have exhausted her as her notes are starting to read like the final stages of a thesis, she has represented us wonderfully well.

Living with dementia has its many daily challenges, but to then be amongst mostly strangers, many who probably have very old fashioned stigmatising attitudes about people with dementia, I have nothing but admiration for her. Mary, we all thank you for your considerable effort.

On June 15, 2016 Mary attended a COSP Morning side events promoting the rights of persons with psycho-social and intellectual disabilities, which was sponsored by Inclusion International. There were back-to-back sessions with no real breaks, because she also had to catch people in between, but she has been busy sending updates.

Here are some of Mary’s remarks about the first session:

Moderator, Vladimir, echoed the disappointment that no women were voted in. Applauded that Robert Martin was elected, as first deaf person, yes, but that everyone that was elected was a man.

Fatima from Kenya, from Inclusion International (II) talked about the Psychosocial (psd) approach to people living with disabilities (plwd); most plwd live at home, and the families receive little or no support. Communities that are designed to be inclusive will be more welcoming to all families. Self-advocacy is necessary if people are to become included in their own communities. They must raise their voice.

Also, families need financial and support network.    But they mostly get information from doctors, so they get mostly only a medical approach, from the time their children are a very young age. So it stays medical. We need to focus on community development efforts that ensure citizens are included. It is not enough to just open the doors. This approach is not sufficient to reach people in remote areas.

This sounds no different to how people with dementia are treated.

Mary wrote of a real contrast between the great Italian efforts and those who argued it was more cost effective to keep disabled people institutionalised. Wow, who would think those attitudes are still even in existence, but to think at an event like this they are prevalent is mildly concerning.

For example, the Italians have closed all mental hospitals. Robert Martin called for the closure of all institutions around the world. It’s so hard, but on behalf of people surviving Psychiatry, he wants to do this. People do not need to be segregated. They are citizens.

SEBASTANO CARDI VP of CRPD
In Italian parliament just adopted new law yesterday: What about the “after” i.e. what happens to the person with disability when parents are no longer there? Plwd always face stigma. Many challenges.

Now, mental hospitals must be closed or used differently. The whole system should be concentrated on community-based facilities. Wants to join forces for a better world.

There was discussions about Psychosocial disabilities (Psd) reported by Mary here;

Yenni Diamente talked on What does it mean to have psychosocial disability in Indonesia? Shackling. Psychotic Drugs. Govt pays $400/month. But the need for drugs is not the problem for these people. They need a job, they need housing. But they take the anti-psychotic drug, and still have no job or home. And they have shame. Medical treatment is only a small part of the solution. Don’t put all the money in that box! A person with psdis has a life, just like anyone else. We need all the support that everybody needs. Meds are only a small part of that.

People see us as incapable of making our own decisions. We are told we have to take the meds. But it makes us feel sick or zombie, and we don’t want to. But in Indonesia, we don’t have the right to say no. We lose the right to vote, to get inheritance, we have no rights as citizens. Can’t open a bank account. Treated like (worse than) a child. Opens up the system to abuse and violence.

Psd still not considered part of disability movement. Psychiatrists talk ABOUT you, and you’re not invited to speak; they speak on your behalf. If you want to talk about psd, don’t talk to psych, talk to the person! That’s the most important message.

Interestingly though, this morning’s panel did not have a person with psd.

Wow, this is almost no different to people with dementia.

And in contrast to the progressive thinking in Italy, one President of an employment agency said that it would cost more to put the people with disabilities (PWD) in community programs, and that it would be dangerous to take them out of institutions and put them at risk of dying in the streets.  He used fear-mongering, unsubstantiated arguments about the cost being higher to care for them in a community than in an institution, and that it would not be possible to follow up with them if they were just living in neighborhoods, and not in institutions where they can be cared for

Perhaps attitudes like this are why people with dementia are still being institutionalised? We look forward to more instalments from Mary, as we pursue our place within the disability community, and claim our human rights in this space as well. No one was offering us a human rights based approach in the dementia sector, so let’s hope the disability sector is the right approach. I certainly think so.

So, onwards and upwards through the fog, as we all work towards a better world for people with dementia and our families.

ADI2016 Budapest: an introduction

1This year, a number of DAI members have had the great privilege and honour to attend the Alzheimer’s Disease International 2016 Conference held the last few days in Budapest. As Chair, CEO and co-founder, as well as now an official ADI Board member, it has been a very busy week, and  none has had time to write a blog about it.

I’m hoping our pictures on Facebook have helped you feel vaguely connected. Most have been added to individual members pages, as I forgot to add many to our own Facebook page!

On the day before the conference, history was made for the second time. The first time we made history was when I was invited to Geneva to present at the WHO First Ministerial Conference on Dementia, and placed Human Rights and Disability Rights on the global agenda last year in March, demanding access to the United Nations Conventions of the Rights of Persons with Disabilities.

This started a global campaign, and with the help and expertise of DAI member Professor Peter Mittler, a report was written by Neil Crowther, on behalf of DAI and ADI. It was submitted to the ADI Council members (the country Alzheimer’s Associations/Societies) on Wednesday, and it was unanimously accepted, and agreed that the campaign for the human rights of people with dementia will be continued, hence o ur second historical moment.

DAI co-founder and current Treasurer, John Sandblom represented us well by giving the Inaugural Richard Taylor Memorial Lecture, which of course, brought may of us to tears. It is though, wonderful to know that Richard’s legacy will live on, and we will also have the first Richard Taylor Advocates Award, to be announced on World Alzheimer’s Day in September of this year. Information regarding this will be sent to our members and supporters very soon.

Until we have time to edit and add the videos and presentations notes from the many speeches given by people with dementia, who by the way, were in every session, the best speakers by far (no bias at all here, as many delegates have said this)…

As soon as I get home to Adelaide, I will make every effort to write a review of the conference, but for now, I have added a photo collage of photographs below.

Those of us who attended, worked very hard to ensure we represented as many voices as humanly possible, and worked very hard trying to do so. As the photographs will show you, we also had a lot of fun!

ADI2016 photo collage

Best wishes,

Kate Swaffer

Human Rights and dementia #ADI2016

We are starting off this week, with last weeks blog! I was unable to find time to write or post one, in part as I am now in Budapest preparing for the 31st Alzheimer’s Disease International conference later this week. After a weekend off  playing tourist, something rarely done these days, I have to focus on my personal studies. On top of that, I decided to dedicate this week to keeping our members up to date with what is happening here at the conference, as a few members are on their way to Budapest, but many more are not able to be here.

One member in particular, who had his Abstract accepted, is not well enough to be here, and I want to say to you  Mick Carmody, we will miss you, and I personally am experiencing something similar to what is called ‘survivor guilt’ as I feel guilty even being here without you. We all love you, and hope you improve soon. <3 <3 <3

So, to get the week started, Professor Peter Mittler is representing us in Geneva tomorrow, and made this submission on our behalf on our human rights and use of the CRPD. Thank you Peter.

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DEMENTIA ALLIANCE INTERNATIONAL[i]

POSITION PAPER: UN GENERAL DAY OF DISCUSSION ON CRPD ARTICLE 19

THE RIGHT OF PERSONS LIVING WITH DEMENTIA TO BE SUPPORTED TO LIVE INDEPENDENTLY IN THE COMMUNITY

By Professor Peter Mittler, DAI Member and Human Rights Adviser

SUMMARY

This submission invites the UN CRPD Committee to take steps to ensure that persons living with dementia are fully included in the implementation of the Convention and the UN 2016-2030 Sustainable Development Goals in order to enable them to fulfil their stated aim “to be helped to live as independently as possible in the community[ii].

This is a world-wide priority for 47.5 million people now living with dementia and a policy imperative for those who will be diagnosed in the decades to come, especially in Low and Middle Income Countries.

INTRODUCTION

Dementia Alliance International was founded in 2014 by people with a diagnosis of dementia across the world and now has 1500 members. It provides a unified voice in claiming their fundamental human right to supports and services to enable them to live well in their community for as long as possible on the same basis as their fellow-citizens.

Dementia Alliance International is the voice of people with dementia. It works closely but autonomously with Alzheimer’s Disease International[iii]– the global voice for people with dementia.

Our joint aims are to

  • Use the CRPD to secure the recognition of the human rights of persons with dementia- internationally, regionally, nationally and locally
  • Ensure that CRPD implementation by Member States includes people with dementia
  • New developments in policy and practice for people with dementia are based on CRPD Principles and Articles
  • Build awareness, commitment and capacity among self-advocates and organisations for persons with dementia to use the CRPD as a tool for change
  • Encourage and inform submissions to the CRPD Committee to secure the inclusion of the rights of persons with dementia in its List of Issues and Concluding Observations and in its relationships with other UN and international agencies in the implementation of the UN 2016-2030 Sustainable Development Goals.

BACKGROUND

Until recently, neither persons with dementia nor national Alzheimer’s Societies have used their right of access to CRPD to which they are legally entitled in the characterisation of disability in 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 active participation in society on an equal basis with others”

It is against this background that DAI Chair and CEO Ms Kate Swaffer included ‘Access to CRPD’ as one of its demands at the WHO First Ministerial Conference on Dementia in March 2015. In addition, a strong, human-rights based resolution submitted by Alzheimer’s Disease International on behalf of 38 national Alzheimer’s Associations was reflected in the first of the General Principles of the Call for Action by WHO Director Dr Margaret Wang[iv].

Although 163 Member States and the European Union have ratified the Convention, there is no evidence that persons with dementia are being included in its implementation at national level. This reflects a pervasive assumption that dementia is the sole responsibility of Health ministries, rather than a joint responsibility across all Departments of State, including Housing, Social Care and Protection, Transport and Justice to enable persons with dementia to have access to the whole range of supports, services and amenities available to their fellow-citizens (Article 19c).

OBSTACLES TO CONTINUED PARTICIPATION IN THE COMMUNITY

Persons with dementia have ‘lived independently and been included in the community’ all their lives but encounter deep-rooted and systemic attitudinal and societal obstacles to continue to do so following diagnosis.

DISENGAGEMENT BY DIAGNOSIS

Exclusion from the community frequently begins with the first disclosure of a diagnosis of dementia. Accounts by persons with dementia in books[v], DAI weekly support groups and the social media include numerous examples of the ‘good, the bad and the ugly’ in ways in which the diagnosis is communicated by clinicians. A book by the late Richard Taylor[vi], a former clinical psychologist, includes a classic chapter based on his personal as well as professional experience contrasting good with bad practice in ways of communicating a diagnosis of dementia.

Kate Swaffer[vii] uses the term ‘Prescribed Disengagement® to characterise the advice that she received to “give up work, give up study, go home and live for the time you’ve got left.” Her husband was told he would soon have to give up work to care for her.

Legal capacity and fitness to drive are immediately threatened by a diagnosis of dementia, rather than evaluated by independent assessment of functioning. This can be particularly traumatic for people with Younger Onset Dementia in mid-career and with responsibilities for young children and elderly parents.

SOCIAL ISOLATION

Many people with dementia have described the loneliness and social isolation which they experience when friends and even family members stop visiting and neighbours cross the street to avoid meeting them. Their isolation is increased by fear of failure and humiliation in going out. Loss of self-identity and self-esteem can occur when household tasks and responsibilities are taken over by the care partner, sometimes on the advice of a professional.

STIGMA

Dementia has now replaced cancer as the illness most feared by the general public and is the reason why many people hesitate to seek help if they are worried about their memory or cognitive functioning. The stigma surrounding dementia is fuelled not only by the media but by politicians and clinicians who talk about time bombs and tsunamis and commit to a ‘world without dementia’ within a generation.

In the meantime, stigma is reflected in the conclusion of an OECD[viii] study that “dementia receives the worst care in the developed world” and a WHO[ix] statement that the disability arising from dementia is higher than in almost all other conditions, with the exception of spinal cord injury and terminal cancer.

PREMATURE RESIDENTIAL CARE (Article 19a)

Most people with dementia in High Income Countries continue to live with a care partner, with supports ranging from zero to daily visits from a support worker, funded by themselves or a publicly-funded agency. The 30 per cent of people with dementia who live alone miss out on even more support due to their single status and inability to register a family carer. In many Low and Middle Income Countries the only alternative is a distant institution.

A person admitted to hospital for reasons not directly connected to their dementia is likely to stay in hospital for much longer than a person without dementia, due as much to the poor care which they receive as to their partner being unable to care for them at home.

A recent UK report[x] based on information collected under the Freedom of Information Act reports that

  • People with dementia stay five to seven times longer in the worst performing hospitals than other people over the age of 65
  • 52-71 per cent of people over 65 who had a fall were people with dementia
  • Thousands of people with dementia are being discharged between 11pm and 6am each year.

The risk of transfer to residential could be reduced by contingency planning with a key worker familiar with the person’s home circumstances. Once in residential care, isolation from the community is compounded by the possibility that some family members and friends will stop visiting, especially if the person with dementia does not appear to recognise them or is uncomfortable in their presence.

THE CARE COUPLE

Many professionals and policy makers generalise about ‘carers’ as if they were a homogeneous group, despite evidence of their individuality in the social media and in the rich variety of their writing[xi]. Because care partners are the main source of support for the person with dementia to live at home and to remain a member of the community, they too have the right to whatever support is needed to help them to do so.

25 per cent of persons with dementia and 50 per cent of care partners are clinically depressed. Richard Taylor’s account of crying for weeks following diagnosis reflects a need for crisis counseling both for him and his wife. His discussion of the impact of the initial impact of his diagnosis and difficulties on his relationship to his wife suggests that both might have been helped by couple counseling.

REHABILITATION PATHWAY

Poor support for people newly diagnosed with dementia is in strong contrast to rehabilitation programmes tailored to the specific needs of people who sustain severe brain damage as a result of a stroke or traffic accident. Kate Swaffer contrasts the current medical model of care with a support pathway based on CRPD[xii]. A service along these lines in provided in the State of Queensland, Australia[xiii].

The concept of ‘post-diagnostic support’ needs to be reconceptualised as a rehabilitation pathway which begins at the time of diagnosis with the offer of a follow-up visit to the hospital or memory clinic where the diagnosis has been given and provides opportunities to ask questions and discuss ways in which support can be given.

From this point, a qualified key worker needs to be appointed to maintain contact with the person with dementia and family members to discuss needs and priorities and provide links to necessary services and supports from all relevant services and community supports.

A rehabilitation pathway should provide access to a wide range of specialists. These include:

  • Occupational therapists to discuss possible adaptations to the home and domestic appliances, television sets and personal computers
  • Physiotherapists to maintain mobility and strength
  • Speech and language therapists to promote language and communication
  • Clinical psychologists to advise on adjustment to diagnosis, improving and maintaining cognitive functioning, maintaining independence and quality of life[xiv]
  • Social workers to consider family issues and provide access to community resources.

PLANNING FOR THE FUTURE

INCLUSION IN UN 2016-2030 SUSTAINABLE DEVELOPMENT GOALS[xv]

The UN 2016-2030 Sustainable Development Goals were launched with a commitment to Leave No One Behind. 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.

COMMUNITY-BASED REHABILITATION

Persons with dementia in Low and Middle Income Countries should be able to benefit from the long established WHO Community-Based Rehabilitation Programme which aims to provide a home-based, first line of support to persons with disabilities and their families from local health and community workers, as well as persons with disabilities and family members.

The most recent revision of the CBR Training Manuals[xvi] was co-written with Disabled Persons’ Organisations and draws on CRPD Principles and Articles to inform policy and practice. The Convention has also been used to underpin the WHO 2014-2021 Disability Action Plan[xvii] but it is not clear whether persons with dementia will benefit from either of these initiatives.

REGIONAL AND NATIONAL DEMENTIA STRATEGIES

As a result of G8 and G7 leadership and the WHO Global Dementia Strategy, Dementia Strategies have been launched by the European Commission, the Pan-American Health Authority and several Member States. Although nearly all participating governments have ratified the Convention, we can find no evidence of it being used to underpin policies.

RECOMMENDATION

Dementia Alliance International requests the CRPD Committee to take steps to raise awareness of the rights of persons with dementia among Member States and at all levels of the United Nations to ensure that they are included in its monitoring and implementation.

ARTICLE 19: GENERAL ISSUES FROM A DEMENTIA PERSPECTIVE

  1. Dementia is one of several health conditions that suggest the need for greater consideration of the impact of impairments on day to day functioning (e.g. epilepsy, Parkinson’s’ Disease, Motor Neurone Disease). Although dementia is a progressive disorder, the rate of deterioration over a period of years is highly variable and levels of functioning also vary from day to day in ways that cannot be captured by routine assessments which influence decisions on legal capacity. There is often a mismatch between performance on tests and everyday life.
  2. Other commentators have pointed out that Living Independently does not mean Living Alone. Article 19 is one of several where the focus is on the individual without sufficient regard to those with whom they share their lives – in particular the person who will lose their identity as a life partner and be automatically designated as ‘the carer’ at the time of diagnosis. Service planners, providers and supporters need to have regard to the dynamics of the ‘care couple and to the distinctive needs of each.
  3. Early versions of the social model of disability conceptualise the environment in terms of obstacles that need to be overcome (e.g “parents are our enemies”) rather than the opportunities it can or could provide to support the person to live independently and be included in the community.

Author: DAI Human Rights Advisor,  Professor Peter Mittler, April 2016
Editor: Kate Swaffer, Chair, CEO & Co-founder, DAI

References

[i] http://www.infodai.org

[ii] http://www.alz.co.uk/sites/default/files/pdfs/global-dementia-charter-i-can-live-well-with-dementia.pdf

[iii] http://www.alz.co.uk

[iv] http://www.who.int/mental_health/neurology/dementia/call_for_action_en.pdf?ua=

[v] Swaffer, K. (2016) What the Hell Happened to My Brain? London: Jessica Kingsley Publishers; Taylor, R (2009) Alzheimer’s From the Inside Out. Baltimore, Md: Health Professions Press; Whitman, L.(ed.) (2016) People with Dementia Speak Out. London: JKP; Rohra, H. (forthcoming) Coming Out of the Shadows: Why I Advocate for People with Dementia. London: JKP.

[vi] Taylor, R. op.cit. If I were an M. and not a Ph.D.

[vii] Swaffer, K. (2015) ‘Dementia and Prescribed Disengagement’. Dementia, 14(3), 3-6.

[viii] http://www.keepeek.com/Digital-Asset-Management/oecd/social-issues-migration-health/addressing-dementia_9789264231726-en#page1

[ix] WHO (2004) Global Burden of Disease. http://www.who.int/healthinfo/global_burden_disease/GBD_report_2004update_full.pdf?ua=1

[x] Alzheimer’s Society (2016) Fix Dementia Care Hospitals. www.alzheimers.org.uk/fixdementiacare

[xi] Whitman, L. ed.) (2009) Telling Tales About Dementia: Experience of Caring. London: JKP; Magnusson, S. (2014) Where Memories Go. www.tworoadsbooks.com

[xii] Swaffer, K. (2016) op.cit pp.165-166.

[xiii] https://www.health.qld.gov.au/cairns_hinterland/docs/gp-dementia-enablement-guide.pdf

[xiv] British Psychological Society (2014) A Guide to Psychosocial Interventions in Early Stages of Dementia; Clinical Psychology in the Early Stages of the Dementia Pathway. www.bps.org.uk/fpop

[xv] UN Sustainable Development Goals. http://www.undp.org/content/undp/en/home/sdgoverview/post-2015-development-agenda.html

[xvi] WHO, UNESCO, ILO & IDDC (2010) Community Based CBR Guidelines: Introductory Booklet, Geneva: WHO. http://apps.who.int/iris/bitstream/10665/44405/9/9789241548052_introductory_eng.pdf

[xvii] WHO (2014) Global Disability Action Plan 2014-2021: Better Health for All Disabilities. Geneva :WHO http://apps.who.int/gb/ebwha/pdf_files/EB134_16-en.pdf?ua=1

March 2016 research wrap: Identity and dementia

who am iThis month, Dr Rahman has written a really interesting research blog on identity, and we are extremely grateful to him for his expertise, his continued willingness to make time to do this for us at no charge.

This support of Dementia Alliance International and all people with dementia in general is greatly appreciated. Thank you Shibley.

What happens to identity when somebody is diagnosed or ‘undiagnosed’ with dementia?

A curious problem has arisen in English dementia service provision.

As a result of the perfect storm of the pressure on primary care to diagnose dementia, and the lack of sufficient resources to primary care, as well as the burgeoning pressures on the memory clinic service, there has been a significant number of people being ‘undiagnosed’ with dementia too.

But having any diagnosis of dementia forces you to make sense of your life as it is, against the background of how it was.

Recent research in dementia has thrown much light on self and identity, and, whilst interesting in itself, provides further clues about how best person-centred integrated care pathways might be best designed in future.

This article in my ‘research roundup’ series looks at recent advances in the research on self and identity in dementia, a hugely important area of research. 

  1. Inaccurate diagnoses of dementia in recent English dementia policy

Last year (20150, it was reported that researchers at the University of Sheffield had found that the number of ‘inaccurate’ referrals by GPs to memory clinics – centres to diagnose dementia – has doubled since the Government’s financial incentivising scheme had been introduced.

A study of 150 patients found that just over half – 52 per cent – who had been sent to memory clinics for scans since October were later found not to have dementia. This compared to rates of between 25 and 30 per cent before the scheme was introduced. Many had temporary memory problems brought on by depression or old age rather than dementia. Inevitably, every misdiagnosis of dementia has a back story too, although the opposite, of people languishing without a diagnosis, is frightful too.

On 26 February 2016, this policy issue had gathered momentum: in an article “Revealed: the dementia diagnosis drive that went too far” in Pulse magazine, Caroline Price (2016) wrote:

“Figures obtained from 11 NHS trusts showed 152% increase in the number of patients wrongly labelled as potentially having dementia under the diagnosis drive, causing them unnecessary anxiety and affecting the GP-patient relationship.

These data, obtained under a Freedom of Information request, reveal there were 10,019 GP referrals across 11 trusts in 2011/12, when the Prime Minister launched his ‘challenge’ on dementia, and that this more than doubled to 22,109 in 2014/15.”

  1. The impact of a diagnosis of dementia: the notion of ‘patienthood’

Being given a diagnosis of dementia has a huge impact on your sense of personal identity.

The diagnosis is bound to invest a lot of emotional energy – particularly if you then go onto advocate in a public arena on behalf of people living with dementia as someone living with dementia yourself.

But if your diagnosis changes – this could well be not because a physician ‘has made a mistake’, but because more information has come to light – e.g. a change in thinking, or a change in the appearance of a brain scan.

The disclosure of the diagnosis heralds, arguably, the beginning of an additional identity of ‘patienthood’, which undoubtedly requires particular sensitivity. Sabat and colleagues are particularly helpful here.

Another ‘fixed’ category would be the ‘patienthood’ of the person that is then combined with a particular diagnosis. Thus, a person’s diagnosis and status as a patient become the key features of identification in a narrative about the person, and the diagnostic label becomes an adjective that then describes the person and thereby restricts his or her social identity. As a result of such a limited identity that is, itself, based on a pathological attribute or set of pathological attributes, the person so labelled can easily become marginalized and essentially imprisoned in a web of negative stereotypes.” (Sabat et al., 2011)

The diagnosis itself can lead to a change of perceived identity with others around you, as Sabat, Napolitano and Fath (2004) note.

When healthy persons refrain from engaging in malignant positioning of the person with AD in the early stages of the disease, the degree to which the person with AD experiences a loss of control, humiliation, embarrassment, and other losses can be ameliorated. As a result, the person’s remaining intact cognitive abilities may be sustained for a longer period of time than might otherwise be the case.”

It is often emphasised how empowering a diagnosis of dementia could be, in that it provides an account of symptoms, and allows you and your closest to plan for the future.

But a complete account, in honesty, needs to embrace how the identity of patienthood can be potentially disempowering too. In a recent study, some participants struggled with their newly acquired label of behavioural variant of frontotemporal dementia, whilst for others “the threat came from their reduced abilities or from lifestyle restrictions imposed upon them due to their illness” (Griffin, Oyebode and Allen, 2015).

  1. The general importance of self and identity

The notion of what makes up “the self” is therefore relevant. From a research perspective, the self is very difficult to define, and researchers have based their studies on a wide variety of models and concepts (Caddell and Clare, 2010). However, empirical evidence regarding the impact of dementia on the self remains limited. (Clare et al., 2013)

Personal identity is defined as the state and feeling of being the same as a person described or claimed, and having unique identifying characteristics that remain stable over time.

Recently, there has been much debate in the literature regarding the extent to which identity remains intact in people with dementia (Caddell and Clare, 2011) – although this seems at odds, potentially, with rapidly disappearing fragments in “the orange” as depicted in the recent Alzheimer’s Research UK campaign for raising dementia awareness entitled “Share the orange”.

This chimes with the prevailing image of dementia as a loss of self and a change of identity leads to the situation that persons with dementia represent difference and otherness. Policies for an ageing society with a large number of persons living with dementia are influenced by this ‘shock doctrine’ of the fear of losing one’s identity and self (Naue and Kroll, 2008): though this may be altogether rather unfair.

Martin Conway (2005) in a challenging, and hugely interesting, article a decade ago threw back to the classical work of William James, emphasising that memory is an important feature of yourself. It would appear intuitively correct that your idea about yourself is based on your recollections of memories about yourself. But this can go wrong – and it is not impossible that this will go wrong in dementia.

Conway describes previous work on ‘coherence’, how the fact pattern about events say in the past are refashioned to emphasise information relevant to your current life. This link with your autobiographical past remains one of the most enduring enigmas of dementia ‘self’ research. Latterly, however, a distinction has been drawn between the continuous, coherent sense of identity that characterises normal human experience, the ‘ontological self’, and the types of self-knowledge that underpin and support it (reviewed in Clare et al., 2013).

But Conway also cites other work where this coherence can strikingly break down; for example a patient living with chronic schizophrenia who convinces himself he is a ‘grandmaster’ of chess despite a complete inability to play chess.

How you perceive changes in self and identity in diagnosis might relate to underlying cognitive processes, according to most recent research.

For example, from a cognitive point of view, patients in the early stages of semantic dementia with a complicated picture of loss of semantic knowledge, knowledge for types of things. This generally involves knowledge of objects, concepts, famous people, and public events, and engenders some particular language deficit.

According to Duval and colleagues (2011), a novel finding of theirs was that persons with semantic dementias had problems in recalling semantic personal events (though not episodic ones to do with events) related to their past selves, and also they seemed to have considerable difficulty imagining what they might become in the future.

This has implications for how people with dementias deal with their concepts of the future, and this field of ‘prospection’ is very interesting indeed.

  1. Looking for the ‘ME’ in dementia

Or an “ecological self” represents awareness of the self as perceived with respect to the physical environment, through the processing of visual, auditory, and somatosensory stimuli. The continuous flow of visual information means that the entity is constantly aware of its position, posture and movement with respect to the environment (Caddell and Clare, 2013).

But such a theory clearly is ill equipped to predict distortions of self and identity which could be hypothesised to take place in the context of people living with higher order visual processing disturbances, say in posterior cortical atrophy?

The trick will be – as it is for most other areas of dementia research and service provision – not to consider dementia as one homogenous mass, and fall back on the individuality of all people living with dementia. This is looking for the ‘ME’ in ‘dementia’.

This is of course the heart of personhood.

 

References

Borland, S. (2015) Patients wrongly told they may have dementia by GPs on a controversial £55 bonus scheme, researchers warn, 24 February 2015, http://www.dailymail.co.uk/health/article-2966163/Patients-wrongly-told-dementia-GPs-controversial-55-bonus-scheme-researchers-warn.html#ixzz43fTkhAbm (accessed 22 March 2016).

Caddell LS, Clare L. (2010) The impact of dementia on self and identity: a systematic review. Clin Psychol Rev. 2010 Feb;30(1):113-26.

Caddell LS, Clare L. (2013) Studying the self in people with dementia: how might we proceed? Dementia (London). Mar;12(2):192-209.

Caddell, LS, Clare, L. (2011) I’m still the same person: The impact of early-stage dementia on identity, Dementia, 10(3) 379–398.

Clare L, Whitaker CJ, Nelis SM, Martyr A, Markova IS, Roth I, Woods RT, Morris RG. (2013) Self-concept in early stage dementia: profile, course, correlates, predictors and implications for quality of life. Int J Geriatr Psychiatry. 2013 May;28(5):494-503.

Conway, M.A. (2005) Memory and the self. Journal of Memory and Language 53, 594–628.

Duval C, Desgranges B, de La Sayette V, Belliard S, Eustache F, Piolino P. (2012) What happens to personal identity when semantic knowledge degrades? A study of the self and autobiographical memory in semantic dementia. Neuropsychologia, Jan;50(2):254 65.

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Author: Dr Shibley Rahman 2016

Who wants to be labelled as disabled?

Screen Shot 2016-03-04 at 4.49.19 pmThis week our blog is focusing on The United Nations Convention of the Rights of Persons with Disabilities (CRPD).  Many people are currently wondering why some people with dementia, and DAI is so active in this area, and why we would want another seemingly negative ‘label’.

Put simply, if we lost our legs in an accident, or had a stroke, we would expect to be supported to continue to live as independently as possible, for as long as possible, with access to things such as this wheelchair. In fact, I feel sure we would consider this our basic human right.

In fact, Article 26 of the CRPD clearly states we have a right to Habilitation and Rehabilitation.

The symptoms of dementia in the earlier phases of the disease, cause us various disabilities, that we know will progress as the dementia progresses. That does not mean we should be told to go home and get our end of life affairs in order and prepare for aged care. Instead, we should be supported to reinvest in life, with the support for our disabilities as required.  It does not mean we are end stage upon diagnosis, with no chance of a good life for at least some time in our futures.

United Nations Enable is the website that supports all the information in the public domain about the Convention of the Rights of Persons with Disabilities (CRPD), and it says;

The CRPD and its Optional Protocol (A/RES/61/106) was adopted on 13 December 2006 at the United Nations Headquarters in New York, and was opened for signature on 30 March 2007. There were 82 signatories to the Convention, 44 signatories to the Optional Protocol, and 1 ratification of the Convention. This is the highest number of signatories in history to a UN Convention on its opening day.

It is the first comprehensive human rights treaty of the 21st century and is the first human rights convention to be open for signature by regional integration organizations. The Convention entered into force on 3 May 2008.

The Convention follows decades of work by the United Nations to change attitudes and approaches to persons with disabilities.

It takes to a new height the movement from viewing persons with disabilities as “objects”  of charity, medical treatment and social protection towards viewing persons with disabilities as “subjects” with rights, who are capable of claiming those rights and making decisions for their lives based on their free and informed consent as well as being active members of society. “

It is intended as a human rights instrument with an explicit, social development dimension. It adopts a broad categorization of persons with disabilities and reaffirms that all persons with all types of disabilities must enjoy all human rights and fundamental freedoms.

The CRPD clarifies and qualifies how all categories of rights apply to persons with disabilities and identifies areas where adaptations have to be made for persons with disabilities to effectively exercise their rights, in areas where their rights have been violated, and where protection of rights must be reinforced.

Being labelled as disabled?

Not only people without a diagnosis of dementia, but also many people with dementia question why we as a community should be working so hard to ensure our rights are not only recognised under the CRPD, but that we have full access to the disability support every other person living with disabilities receives.

Therefore, Disability Rights for people with dementia are essential for us to progress with full Citizenship and opportunities to live, not only die from dementia.

Why would we want another label?

After all, we already have to live with the label of dementia.

We have to live with the continuing stigma of dementia, including the passive stigma, and the isolation, the discrimination and the myths and misperceptions of others.  We suffer some of the time from dementia as well as many other things, but we are still faced with almost daily disrespect of being collectively labelled ‘dementia sufferers’.

As we achieve full access to the CRPD, it will start to make a difference to the lived experience of dementia.

This chart below, with the list of Articles very simply shows why it really is an important step forward for people with dementia to accept not only what feels like a negative label (disabled), but to claim our rights under the CRPD.

The reality is that once we do, legislation will ultimately fully ensure our rights to very simple things like “Nothing about us, without us.”

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Human rights update, January 2016

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Our human rights and disability rights advisor, and DAI member Professor Peter Mittler has agreed to write a monthly update on the progress (or not) that is happening in relations to the recognition of people with dementia under the United Nations Convention on the Rights of Persons  with Disabilities. Thank you Peter, of your expertise and generosity to our members, and to all people with a diagnosis of dementia.

Dementia Alliance International (DAI) and Alzheimer’s Disease International (ADI) are working closely together towards recognition of people with dementia as people living with disabilities, under the United Nations Conventions of the Rights of Persons with Disabilities (CRPD). Although people with dementia are included in scope of disability in Article 1 of the Convention, we have not claimed this right so far.

ADI’s Chair, Mr Glenn Rees AM spoke in Singapore last year, and his speech, Dementia Friendly Communities: Global Initiatives And Future Directions at the 25TH Anniversary Celebration of Alzheimer’s Disease Association of Singapore last year, outlined clearly how the dementia friendly communities work needs to move forward, discussing two key objectives. The first was the objective of reducing stigma and understanding of dementia by greater awareness and meaningful engagement for persons with dementia of all ages…that is the lived experience approach.

The second point he made was about the practical expression of this movement, including human rights. He said; For the first time, policy makers and consumers are focusing on supporting and protecting the rights of a person with dementia in a similar way to what has been achieved in the disability field- for example in the charter of rights of people with dementia and their carers in Scotland and recent work to ensure that dementia is included in the Convention  on the Rights of Persons with Disabilities.

ADI have commissioned a human rights working party, with Alzheimer’s Scotland having been asked to take the lead, and including our Human Rights Advisor, Professor Peter Mittler. We hope this work progresses quickly, as it has become urgent that our human rights and disability rights are recognised, and acted upon.

There will be a human rights session at the ADI conference in Budapest and on his way to Budapest Professor Mittler is representing us to make a submission on Independent Living from a dementia perspective at a UN General Day of Discussion in Geneva on April 19th.

The following is Peter’s update and suggestions for action we can take now on the Convention.

UN CONVENTION ON THE RIGHTS OF PERSONS WITH DISABILITIES:  SUGGESTIONS FOR ACTION

The 161 countries that have ratified the CRPD are required to submit regular reports to the UN CRPD Committee. Non-Governmental Organisations (NGOs) and Disabled Persons Organisations (DPOs) have the right to submit ‘parallel reports’ which are taken into consideration in the Committee’s Concluding Observations and Recommendations.

Organisations of and for people with dementia can already make use of this right. A few are preparing to do so.

DAI strongly recommends that all national and regional Alzheimer Societies use this opportunity to protect and promote the basic human rights of more than 47 million people with dementia globally.

The following countries will be studied by the CRPD Committee in 2016

April 2016: Bolivia, Chile, Lithuania, Portugal, Serbia, Thailand, Uganda.

August 2016: Colombia, Ethiopia, Guatemala, Italy, Moldova, United Arab Emirates, Uruguay

Countries still to be examined:

Albania, Algeria, Armenia, Bosnia and Herzegovina, Bulgaria, Canada, Cuba, Cyprus, Estonia, Greece, Haiti, Honduras, India, Iran, Jordan, Kuwait, Latvia, Luxembourg, Malta, Montenegro, Morocco, Myanmar, Nepal, Norway, Oman, Panama, Philippines, Poland, Russian Federation, Rwanda, Saudi Arabia, Senegal, Seychelles, Slovenia, South Africa, Sudan, The former Yugoslav Republic of Macedonia, Turkey, United Kingdom of Great Britain and Northern Ireland, Venezuela.

All relevant reports are on the website of the UN Office of the High Commissioner on Human Rights:    http://www.ohchr.org/EN/HRBodies/CRPD/Pages/CRPDIndex.aspxOpen sessions can be watched on UN webcasts

An accessible Users Guide to the Convention is on http://www.equalityhumanrights.com/publication/united-nations-convention-rights-people-disabilities-equality-and-human-rights-commission-guidance.

Further information from Dementia Alliance International.

Reminder: The next DAI A Meeting of The Minds Webinar, Living with dementia: new perspectives, is with Dr Al Power, whom many of you have already registered for. Please register now if you haven’t already, as we already have a large number of registered attendees. You can register here…