Our continued strategic partnership with Alzheimer’s Disease International; we thank them for their continued sponsorship and support
Our first strategic partnership with a national advocacy organisation; thank you Dementia Australia for your support in 2019, and your committment to continued sponsorship and support of DAI into 2020 and beyond
Representation at the World Health Assembly in May, the Rehabilitation 2030 meetings, and the Mental health Forum in October
The first DAI Side Event “Dementia: the leading cause of disability” was held at the Conference Of State Parties (COSP) on the Rights of Persons with Disabilities (CRPD); this was the first time a Side Event dedicated to dmentia has ever been held at the COSP in New York
DAI held its first Capacity Building Workshop in Las Angeles in July
DAI was proud to become a Champion Organisation partner with StepUp 4 Dementia Research in Australia; supporting research is imperative for treatments, as well as improving care and reducing risk of dementia, If you live in Australia, please sign up.
Dr Jennifer Bute (DAI member) continues to support the ADI Alzheimer’s University, and other members in the UK also provide support to ADI, including Howard Gordon presenting on the panel, Let’s Talk about Dementia Research: Maintaining hope when trials end
A second volunteer, Tamara Claunch from Houston Texas joined long time volunteer Sarah Yeates; thanks to them both. They have also agreed to take on more formal roles at DAI, to support our board and leadership (to be anounced next week)
Membership is increasing steadily
Increases to additional new free members services, including, for example two Living Alone Social peer to peer support groups
Updates to many of our Governance documents and By Laws, soon to be announced and shared
It took almost six years, but we now have a committed group of professionals who have agreed to be members of our Professional Advisory Committee, soon to be announced.
We introduced the new Board Of Directors for 2020 at the Annual General Meeting in November(to be announced in detail next week), congratulate them all, and thank them for their willingness to serve on the BOD
The WHO launched their new Quality Rights initiative and Toolkit. DAI members Professor Peter Mittler and Kate Swaffer both contributed significantly to this on behalf of DAI
Many DAI members have also worked with the WHO on their Dementia Friendly Initiatives work, which is still in draft stage and is to be released this year
Ms. Catalina Devandas Aguilar, the Special Rapporteur on the rights of person with disabilities launched a report on the rights of older persons with disabilities at the 74th session of the General Assembly in October 2019. The report identifies and addresses specific human rights concerns faced by both people with disabilities who are ageing and older persons who acquire a disability. DAI was invited to review the draft, and able to ensure dementia was included
We have two formal publication in progress, finally, to be released sometime in 2020
Of course, there have been many other achievements by individual DAI members, working locally, nationally or globally, as always, far too many to list. However, DAI knows that advocacy takes a physical and cognitive (and sometmes emotional) toll on every person with dementia, and their care partner and family.
The CRPD is now ten years old. Why has it taken people with dementia so long to demand their rights?
Dementia was not mentioned by any of the speakers or the 800 delegates from all over the world at the recent Global Disability Summit organized by the Department for International Development (DfID), the government of Kenya and the International Disability Alliance.
Three of us with dementia (Peter Mittler, Howard Gordon and Nigel Hullah) sent in questions but they were not chosen for discussion.
I was diagnosed with Alzheimer’s Disease 12 years ago but I am still me. Much worse than my Alzheimer’s is severe deafness which makes it difficult for me to use the phone or hear what the person next to me in a noisy restaurant is saying.
I have worked in the disability field since the 1950, first as an NHS clinical psychologist and then as a university teacher in psychology and education and researcher in the social sciences. I have also been active in the British Psychological Society, most recently in my new role as ‘a psychologist living with dementia’.
My priority for some years has been a commitment to human rights and social justice for all disabled people, particularly those living with Alzheimer’s and other dementias.
I started working with International Disabled Persons Organisations in in 1979 when the UN was taking advice on the 1981 International Year of Disabled Persons and UNESCO was launching a 5-year programme on what we would now call inclusive education.
My most vivid memories come from the founders of the disability movement who insisted on co-production of policy with ministers and officials. Most of the pioneers were men in wheelchairs demanding access to jobs, buildings and documents. The strapline of ‘Nothing About Us Without Us’ was launched in the 60s and has now been extended to 50 million people living with dementia world-wide.
Life in Alzheimerland is very different.
Most professionals are respected as experts. Conferences are polite and collegial, despite evidence of deteriorating services and now an NHS and care system on its knees for human and material resources.
The older we get, the higher the risk of one or more age-related illnesses. Some are more at risk than others: it helps to be married and have a family; your risk is lower if you lead an active life, meet friends, eat healthy foods, go easy on the alcohol and take a lot of exercise because the brain needs blood to activate neurons to make connections with other cells. It also helps if you’ve had a good education and speak a second language.
Being given a diagnosis of dementia can be a traumatic experience.
Some people have cried for weeks or can’t sleep for worry about what is to become of them. Others are asked to hand over their driving licenses or to stop work and take out a Power of Attorney for when they lose capacity. Many have reported that friends and neighbours cross the street to avoid them because they don’t know what to say. The fear and stigma around dementia leads to social isolation and from there to apathy and depression.
Most Board members are under 65, as are all those who have written books about their experiences – the latest is Wendy Mitchell’s highly readable Someone I used to Know (2017).
Most of the advocacy has come from people with younger onset dementia – around ten percent of the total.
Britain will soon have a million people living with dementia; many more are directly affected by dementia, including care partners and relatives. There will be 75 million by 2030 world-wide and we are already being left behind in the UN’s 17 Sustainable Development Goals. Much of the increase will take place in Low and Middle-Income Countries where diagnosis is a rarity.
People living with Alzheimer’s don’t usually think of themselves as disabled or as grey panthers. They want a quiet life and to follow their interests.
Action is needed because the OECD has stated that ‘people living with dementia receive the worst care in the developed world’ (2015).
Alzheimer’s Disease International and the World Health Organisation has estimated that one person with dementia is being diagnosed with dementia every three seconds. The cost of dementia is now $1 trillion.
The Alzheimer’s Society UK used data collected from NHS Trusts under the Freedom of Information Act to establish that the chances of falling while in a general hospital are twice as large as in other over 65s and that thousands are being discharged between 11pm and 7am because the beds are needed by other patients. In this country diagnostic rates vary considerably even within a conurbation the size of Manchester but are much lower in Low and Middle Income countries where the condition is often seen as normal ageing.
Although the United Nations Human Rights Bodies recognize dementia as a cognitive disability, there is little evidence that people with dementia are being consulted or involved by their governments in planning services when a country is implementing the CRPD, as required in CRPD Article 4.3. This amounts to systemic – if unintentional – discrimination by their government.
Over a year ago, the World Health Organisation launched its Global Action Plan for a Public Health Policy in Dementia, together with a parallel plan for Mental Health. Unfortunately, very few governments have taken any action to use it – and that includes NHS England and Dementia United.
To end on a positive note: here are the recommendations for a Rehabilitation Pathway made by Dementia Alliance International to the CRPD Committee in 2016.
Rehabilitation should begin at the point of diagnosis when the doctor giving the diagnosis introduces a home visitor who will visit the person or the care couple as the link to community supports and services.
The home visitor can be a health or social care professional who visits the care couple to discuss their priorities. Their task is to try to arrange support from health and social care from the voluntary sector. These might include an occupational therapist, physiotherapist, speech and language therapist, clinical psychologist and social worker: it depends on the needs of the care couple and other members of the household.
Utopia?
Not at all: something like this exists in some parts of the country.
These are islands of excellence in a sea of poor or non-existent post-diagnostic support.
[1] Professor Peter Mittler, CBE, FRSA, MA, M.Ed, Ph.D (Psychology); Clinical Psychologist 1954-1963; Lecturer in Developmental and Abnormal Psychology, Birkbeck College, University of London (1963-1968); Founding Director Hester Adrian Research Centre for the Study of Learning Processes in the Mentally Handicapped University of Manchester (1968-1992); Professor of Education, Head of School of Education and Dean of the Faculty of Education, University of Manchester (1991-1995). Currently Hon Research Fellow Division of Nursing, Midwifery and Social Work in the Faculty of Sustainability, Education, Environment and Development, University of Manchester.
