Tag Archives: Professor Peter Mittler

DAI at the Global Disability Summit in London

Howard Gordon and Professor Peter Mittler relaxing at the Global Disability Summit 2018

Along with Professor Peter Mittler, Howard Gordon attended the recent Global Disability Summit in London, representing Kate Swaffer and DAI at the Civil Society Forum and Global Disability Summit in London on 23rd  – 24thJuly 2018.

Whilst they DAI members wear many hats and advocate at many levels locally, nationally and internationally, Howard and Peter were attending the Summit as members of DAI. Amy Little from GADAA and the Alzheimer’s Society UK supported our members, also enabling DAI to have brochures and materials on the MarketStall she was hosting.

It was also pleasing to note that Nigel Hullah from the 3 Nations Dementia Working Group was also in attendance. Working collaboratively and together, we are so much stronger, especially wheh trying to represent 50 million people.

We have had a lot of activity since this Summit was held, which happened in Chicago, so the number of blogs in our draft folder is rapidly growing, and as we don’t want to overload you, we will only post weekly at this point.

For World Alzheimer’s Month, we intend to have a daily blog, so keep your eyes on your inbox from the 1st of September.

Howard wrote this summary for us:

In June, I learned of the Civil Society Forum and the Global Disability Summit that was to be held in London, organised by the International Disability Alliance and the UK and Kenyan Governments.

On further investigation, neither days appeared involve anyone living with Dementia as a speaker or delegate and I contacted the International Disability Alliance for clarification. After numerous emails from myself, Kate Swaffer and others we finally secured three places as delegates for the two days, one for the Alzheimer’s Society and two for DAI but sadly even though I tried up to the day before, no speaker.

DAI shared a stand with GADAA, the Stride Project and The Alzheimer’s Society and during the intervals we were there talking to delegates and making connections with DAI and the Stride Project.

The objectives of the summit were:

  • Raise global attention and focus on a neglected area
  • Bring in new voices and approaches to broaden engagement
  • Mobilise new global and national commitments on disability and
  • Showcase best practice and evidence from across the world

During the two days there were many opportunities to talk about rights, post-diagnosis support, services, funding and inclusion and although there was no opportunity to speak, I had taken copies of one of the DAI statements prepared by Kate Swaffer and some were placed on the stand and others I handed out as I spoke to delegates, at least DAI’s message was communicated.

One of the videos shown at the Summit

The main opportunities that may come from the two days are:

New DAI members in three African countries.

An invitation for DAI to be involved in the work of the UK Department for International Development and.

A meeting with Sir Philip Alston who is undertaking a UN special investigation into poverty and disabilities in the UK.

The Charter for Change, is full of promise but the devil is in the detail and whether Governments and organisations follow through with their commitments.

If the reaction of a member of the House of Lords to being told I have Dementia during our conversation is anything to go by, I have my doubts.

You can find a shortened version of the charter here:

https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/725336/Global-Disability-Summit-charter-easy-read2.pdf

The two days were different in that the forum was more about DPO’s and NGO’s whereas the Summit was not unexpectedly, more a political backslapping exercise.

DAI Statement

My name is Howard Gordon from Sheffield in the UK, I am a person living with COPD, Alzheimer’s and Frontotemporal Dementia, here today as a member of, and representing Dementia Alliance International, and our Chair and CEO, Kate Swaffer. DAI is an organisation that represents the 50 million people currently living with dementia. I am one of them.

The WHO states there is a new diagnosis of dementia every 3 seconds, and whilst dementia is a chronic, progressive terminal condition, it is also the leading cause of death and disability in older persons.

Dementia Alliance International is the global voice of people with dementia, and Alzheimer’s Disease International is the global voice on dementia. Both are lead organisations of the Global Alzheimer’s & Dementia Action Alliance and the impact of dementia as a disability, and on women are two areas of our focus.

On the occasion of this Global Disability Summit, we ask that the you take notice that many national health systems exclude the collection of data on their citizens over age 60, others only report data to age 49, and less data is collected on women and girls than on men.

There is a need to disaggregate data by disability, sex and age to understand the state of women with disabilities, especially in LMIC’s and remote communities, and informing policies to ensure their effective inclusion and the full realization of their human rights.

Together, we urge continued attention to neurocognitive disorders in national data sets and refer the commission to the work of the Global Dementia Observatory project of the WHO which is developing a knowledge and practice exchange for Member States in support of the Global Dementia action plan as adopted by the WHO in May 2017 and the PAHO regional dementia action plan.

We also note that the disability due to many forms of dementia; especially Alzheimer’s disease often only diagnosed in later life, results in likely undercount of disability and access to rights redress.

Professor Peter Mittler stated in 2016; “Although people with dementia are indisputably included in the characterisation of disability in CRPD Article 1, governments are not including them in their implementation of the Convention. This could be considered as an example of systemic discrimination against millions of people.”

As a member of Dementia Alliance International representing the 50 million people currently living with dementia, and those being diagnosed every 3 seconds, of which the majority are living in lower and middle-income countries, we ask to be included; which also means support to be includes, both in terms of our cognitive and or other disabilities, and funding to enable attendance. Dementia ensures for the vast majority of people, an enforced form of poverty, due to the discrimination and stigma still experienced.

Dementia Alliance International would also like to remind delegates here today that people living with dementia have the same rights as persons with other disabilities, and we must move away from the medicalisation of dementia and instead view it through the lens of acquired disability.

Everyone with dementia is a rights bearer under the UN Convention on the Rights of Persons with Disabilities (CRPD). All State Parties to the CRPD are committed under international law to include persons with dementia in implementation of the convention.

Access to the CRPD is an essential right for all people living with dementia however there is limited evidence this right is being realised. Yet still many with dementia face abuses and violations of their basic rights. This can range from a lack of access to health services, to a culture of discrimination and even violence against those with the condition. People living with dementia everywhere must be supported to claim their rights as human beings with disabilities.

It is also imperative the impact on women and girls of dementia is considered.

Women are disproportionately affected by dementia. More women than men live with dementia, and women and girls provide the majority of unpaid care and face the greatest stigma.

Dementia is listed by the WHO as the fifth highest cause of death for women worldwide and is the leading cause of death and disability in older persons.

Women make up 2/3 of dementia care supporters and more than 70% in lower and middle-income countries. Unpaid women carers compared to male carers, are also more often unemployed due to their unpaid role; girls who are carers also miss out on education.

Everyone impacted by dementia receives little if any health care, including a lack of access to a diagnosis, nor appropriate support to live with dementia once diagnosed.

Older women, especially widows, can be exposed to what has been termed a ‘triple jeopardy’ discriminated against as a result of their age, sex and condition (carer or diagnosed with dementia).

The stigma surrounding dementia exists universally, with women more likely to be stigmatised in this way.  Extreme forms of discrimination can lead to women with the condition facing abuse, violence and even death.

Governments, international civil society and partners around the world must get behind this global challenge and unite for a world where no woman is left behind because of her dementia.

Gendered barriers to mobility and accessing justice lead to isolation and exclusion.

Understanding intersecting forms of gender- and disability-based violence, exploitation and abuse against women with disabilities including forced medical and psychiatric interventions.

Women with disabilities experience this type of abuse at disproportionately higher rates than others, and in unique forms owing to ingrained discrimination and stigmatization.

It is estimated that women with disabilities are 1.5 to 10 times more likely to be physically or sexually abused by a family member or caregiver than other women.

Women with disabilities are often excluded from national laws and policies and remain marginal to global discussions and agreements relevant to their empowerment. The global women’s agenda seldom takes into consideration the issues and concerns of women with disabilities.

In addition, women with disabilities are also neglected within the disability movement and the mainstream women’s movement. Stand-alone policies on women with disabilities remain limited; they are often excluded in policymaking and decision-making processes.

Finally, we ask governments, Member states, NGO’s, DPO’s and Civil Society to consider their responsibility to provide the financial support so often needed to enable people living with dementia to attend meetings and conferences on these and other matters affecting them, in line with

“Nothing about us, without us”,

We therefore ask we leave no one behind, including people with dementia.

The media need to refrain from promoting the perception that we are all suffer, I do not suffer now but I know I will suffer later in my journey, but I do not want to be referred to as a sufferer. If I had Cancer, the media would refer to me as a fighter, yet I am a fighter, I fight every day to live within the reducing limits of my Dementia. Just because I have a terminal disability, does not mean I should not be treated to equally with other persons in my community.

Dementia is no longer a silent disease, we have rights under the UN conventions and we no longer wish to be subjected to the philosophy of BPSD leading to Chemical Restraint, Sectioning and Involuntary Care.

I do not consider myself a sufferer, I am a fighter, fighting my co-morbidities and fighting for our rights

DAI also looks forward to the day when we no longer need to define people by disability, and we are all treated equally.

We therefore ask we leave no one behind through the full implementation of the CRPD, including people with dementia.

Thank you.

Howard Gordon.

Sources for the statement: 

The Dementia Alliance International, the World Health Organisanisation, the United Nations, the CRPD, the Global Alzheimer’s and Dementia Action Alliance, and the Alzheimer’s Society UK.

Human rights are not an abstract concept, by Owen Miller

blogs_guest_owenmiller_140x140px-wpcf_128x128With permission, we are publishing this blog written by by Owen Miller. It was initially published as part of the Scottish Council for Voluntary Organisations (SCVO) #RightApproach campaign, and can be viewed here.

Thank you Own, for permission to publish it in full here for our members and supporters, and thank you Alzheimer’s Scotland who have lead the human rights base approach to dementia, which DAI, with the support of our Human Rights Advisor Professor Peter Mittler is now working so hard towards making a reality globally.

Human rights are not an abstract concept

By Own Miller, first published on September 1, 2016

“Taking the #rightapproach empowers people with dementia and their carers.

Human rights are inalienable to each and every person. They cannot be given to us. But they can be obstructed or restricted by a number of factors, some unintentional.

Every day we exercise our human rights in a number of ways, so much so that we take them for granted. Our communication, our choices and our actions are human rights playing out in practice. They are fundamental to who we are as individuals and allow us to play active roles in the societies in which we live, take part in activities we enjoy and go about our lives in a meaningful way.

But too often people with dementia find their rights restricted by the stigma which often surrounds their condition. Assumptions are made about a person’s capacity to make decisions. Risk-aversion becomes standard practice. Attention turns to what a person cannot do rather than what they can. Often this comes about as a result of circumstances in which well-meaning attempts are made to protect the person from harm or do what is perceived to be in their best interests. However, it is often the case that doing so fundamentally fails to respect the person as someone with unique experiences, interests and abilities, who can still actively and meaningfully engage with their community.

Alzheimer Scotland’s public policy work is grounded in a rights-based approach at both a national and local level.

The PANEL (Participation, Accountability, Non-Discrimination, Empowerment and Legality) principles provide a strong framework for ensuring that a rights-based approach is taken in in practice. This can be applied in a range of contexts and settings, from the way an individual is treated as the result of stigma up to the highest level of decision making on health and social care services.

Alzheimer Scotland’s public policy work is grounded in a rights-based approach at both a national and local level. A fundamental part of this involves making sure that the views and experiences of people with dementia, their families and carers, underpin our own internal policy development; for example, our 8 Pillars Model of Community Support and Advanced Dementia Practice Model.

Externally, the Scottish Dementia Working Group and the National Dementia Carers Action Network are well established national groups which have led the way in showing how involvement can work. Both groups meet with Scottish Ministers and civil servants to discuss issues which matter to them and have been involved in the development and implementation of Scotland’s dementia strategies. They have also informed national training programmes such as the Promoting Excellence Framework and worked with academic institutions to share their experiences with nursing and Allied Health Professional students to raise awareness of future generations of practitioners.

More recently, local groups have come together to shape their communities. They have been engaging decision makers within Integrated Joint Boards, helping local businesses and organisations to become more Dementia friendly, and working with local schools to raise awareness of dementia amongst younger people.

People with dementia and their carers have time and again shown us their commitment to working and supporting policy, strategy and their communities, in order to ensure that their experiences drives improvements.

There is a common perception that human rights are abstract concepts which exist only in the domain of legal professionals and policy makers, with no bearing on real life. This is demonstrably untrue – we need everyone across the statutory, third and independent sectors to support involvement and engagement in a meaningful way. When given the opportunity, people with dementia and their carers are more than able and willing to exercise their human rights in affirming and meaningful way.”

Important: Opinions expressed by bloggers are their own and don’t represent those of the Scottish Council for Voluntary Organisations.

DAI Media Release

The human rights of people living with dementia: from Rhetoric to Reality

Dementia Alliance International is proud to be launching its first official publication to coincide with the adoption by Alzheimer’s Disease International of a Human Right based approach, and to coincide with Dementia Awareness Week UK 2016. With input from our Human Rights Advisor Professor Peter Mittler, and other experts, we hope this guide will educate and support the activities of individuals and organisations, and will be the beginning of real change.  We have had much rhetoric and agreement that we have human rights; now we want real action.

Media Release:

There are currently more than 47 million people with dementia globally and one new diagnosis every 3.2 seconds[i]. There are 850,000 people in the UK who have a form of dementia[ii], more than 5 million[iii] in America, and more than 353,800[iv] Australians with dementia in Australia.  If dementia were a country, it would be the 18th largest economy.

Dementia Alliance International (DAI) is an advocacy group, the peak body and global voice of people with dementia. Our mission includes Human Rights based approaches that are applied to the pre and post-diagnostic experiences of people with a dementia, in every way. We advocate for a more ethical pathway of support that includes our human right to full rehabilitation and full inclusion in civil society; “nothing about us, without us.”

“We are launching this landmark Dementia Alliance International guide because, as a direct result of DAI’s advocacy and a rights-based approach including access to the United Nations Convention on the Rights of Persons with Disabilities (CRPD) has just been adopted by Alzheimer’s Disease International. This is a watershed moment for people with dementia across the world.”  Kate Swaffer

The human rights of people with dementia lie at the heart of our work. Access to the UN Disability Convention was one of the demands made by DAI’s Chair, Kate Swaffer at the World Health Organisation’s First Ministerial Conference on Dementia held in Geneva in March 2015. Since then, we have done everything we can to make a reality of that demand.

“What matters to us now is that people living with dementia should be empowered to use their undisputed right of access to this and to other relevant UN Human Rights Conventions, including a future Convention on the Rights of Older Persons.” Professor Peter Mittler

You can download a copy of our publication here: Human Rights for People Living with Dementia – Rhetoric to Reality

You can view a video of Kate Swaffer and Peter Mittler introducing the need for a human rights based approach to dementia at the recent ADI Conference in Budapest here:

Membership of DAI is exclusive to people with a medically confirmed diagnosis of dementia; to join our exclusive club or to join a support group, visit us here www.joindai.org.

Contact details

Contact Kate Swaffer for more information or read more about the work of Dementia Alliance International here.

Follow us on @DementiaAlliance

Kate Swaffer, Chair, CEO, Co-founder of Dementia Alliance International and author of What the hell happened to my brain?: Living beyond dementia, published on January 21, 2016.

References

[i] World Health Organisation, Dementia Statistics (2015) http://www.who.int/mediacentre/news/releases/2015/action-on-dementia/en/

[ii] Alzheimer’s Association, (2016). 2016 Alzheimer’s Disease Facts and Figures. http://www.alz.org/facts/overview.asp

[iii] Alzheimer’s Society UK (2014). Dementia 2014 report statistics, https://www.alzheimers.org.uk/statistics

[iv] Alzheimer’s Australia (2016) Key Statistics, https://fightdementia.org.au/about-dementia/statistics

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

The rights of people with disabilities, including people with dementia #DAM2015 Day 24

Professor Peter Mittler, member of  and advisor to Dementia Alliance International on the rights of people with dementia to be included in the UN Convention on the Rights of Persons with Disabilities presented to our members at our Open members Meeting earlier this week.

It is Day 24 of World Alzheimer’s Month 2015 #WAM2015, and human rights for people with dementia is a current global topic of interest to us all. This of course, includes society supporting our disabilities, caused through having this or that type of dementia, in the same way wheel chair ramps are provided. It is simply our legal right, but until recently the sector has not even been advocating for this.

We thank Peter sincerely for his advocacy in this area for people with dementia, and for his time and expertise in sharing with our members.  With permission, we recorded the presentation and will share it today for those who could not attend the meeting, either due to being unavailable, or because of not being a member of DAI.

Editor: Kate Swaffer