Tag Archives: Alzheimer’s Disease International

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

Dementia Friendly Communities Defined by Nicole Batsch

Nicole Batsch has over 18 years experience in developing and supporting ageing and dementia care programmes across the US and globally. She is currently obtaining her PhD from King’s College London and is a consultant with Alzheimer’s Disease International.

Nicole presented to Dementia Alliance International (DAI) members and supporters recently at our A Meeting of the Mind Webinar series: “Dementia Friendly Communities Defined – Key Components for a Successful Start”

If you are a in paid employment, DAI asks you make a donation of $US35.00 to view it, the fee charged if you had registered to attend on the day. Please make your donation here… Thank you.

This also allows us to continue to support you by providing these educational webinars, with eminent international speakers.

Whilst it is freely available here, we are a fledgling not for profit group, working to support people with dementia to support themselves, with no permanent funding. Your donations help people with dementia support themselves.

Dementia Alliance International (DAI is a non-profit group of people with dementia from the USA, Canada, Australia and other countries that seek to represent, support, and educate others living with the disease, and an organization that will provide a unified voice of strength, advocacy and support in the fight for individual autonomy and improved quality of life.

Membership of Dementia Alliance International is free, and open to anyone with a medically confirmed diagnosis of any type of dementia. Or you can subscribe to our newsletter or weekly blog.

Visit us at www.infodai.org to subscribe to our blog and newsletters,  or become a member if you are a person with a medically confirmed diagnosis of a dementia at www.joindai.org

Today is World Alzheimer’s Day #WAM2015 Day 21

September is World Alzheimer’s Month™, an international campaign to raise awareness and challenge stigma. It’s a time for action, a global movement united by its call for change, but also a time to reflect on the impact of dementia, a disease that will affect more and more people as the years pass.

Today is World Alzheimer’s Day.

 Screen Shot 2015-09-21 at 8.09.05 amAlzheimer’s Disease International (ADI ) calls for WHO Member States to adopt a resolution on dementia.
 

On World Alzheimer’s Day, Alzheimer’s Disease International is calling on the World Health Organization (WHO) Member States to adopt a resolution on dementia. They are also calling for dementia to be included in international development aid programmes to support low and middle income nations, countries which will account for 68% of the total global prevalence by the middle of the century.

Read ADI’s statement in full.

During September, thousands of events are taking place around the world, organised by ADI member associations.

Dementia Alliance International (DAI) has not had more than one event, but we have been publishing a daily blog, to support understanding and awareness of dementia, for members and our supporters.

World Alzheimer’s Month provides an opportunity for Alzheimer associations around the world to gain recognition and credibility for the work they do, placing themselves in a stronger position to influence opinion leaders and governments.

ADI continues to stand alongside Alzheimer associations around the world to fight to improve the lives of people living with the disease, both now and in the future.

As DAI develops our collaboration with ADI, we hope to support an increase in the support and services for people with dementia, and for the voice of those of us with the lived experience of dementia to be heard all around the world.

Take a look at the official World Alzheimer’s Month website for more information and access to digital resources.

Watch ADI’s CE, Marc Wortmann’s video about this years campaign;

Dementia Awareness Month 2015

Glenn Rees 1050 x 525Welcome to World Alzheimer’s Month!

However, as with some countries, Dementia Alliance International has chosen to call it Dementia Awareness Month 2015, as that covers all of our members, many of whom have a dementia other than Alzheimer’s Disease.

We are aiming to have more activity here than usual, and are kicking off this special month with your invitation to our September A Meeting of The minds Webinar.

Our eminent guest speaker is Mr Glenn Rees, AM, Chair of Alzheimer’s Disease.

Please register here for your free tickets…

 

The topic is: Global Perspectives of Dementia: what are the priorities?

The 2015 World Alzheimer’s Report sets out a call to action and some conclusions and recommendations, found at the end of the report under Final Conclusions and Recommendations in the report.

How should people with dementia think about these? What are the priorities from a consumer perspective? 

The objective of this presentation and discussion is to help frame some thoughts, which will guide ADI and DAI in their partnership and work.

You will have the opportunity to ask questions and join the conversation after Glenn’s presentation, and we look forward to seeing in you at this event. 

Your donations are sincerely appreciated; they do make a real difference to the lives of people with dementia through supporting the work of Dementia Alliance International. Please donate here…

Image source: Alzheimer's Disease International
Image source: Alzheimer’s Disease International

 

World Alzheimer’s Report

Media release from Alzheimer’s Disease International:

GLOBAL COST OF DEMENTIA SET TO REACH US $1 TRILLION BY 2018

World Alzheimer Report 2015 estimates that someone in the world develops dementia every 3 seconds.

London, 25 August 2015: The World Alzheimer Report 2015: ‘The Global Impact of Dementia: An analysis of prevalence, incidence, cost and trends’, released today, has found that there are currently around 46.8 million people living with dementia around the world, with numbers projected to nearly double every 20 years, increasing to 74.7 million by 2030 and 131.5 million by 2050.

There are over 9.9 million new cases of dementia each year worldwide, implying one new case every 3.2 seconds.

The report shows that the current annual societal and economic cost of dementia is US $818 billion, and it is expected to become a trillion dollar disease in just three years’ time. The findings show that the cost of dementia has increased by 35% since the 2010 World Alzheimer Report estimate of US $604 billion. This means that if global dementia care were a country, it would be the 18th largest economy in the world, and would exceed the market values of companies such as Apple (US $742 billion) and Google (US $368 billion)*.

The report updates Alzheimer’s Disease International’s (ADI) data on dementia’s global prevalence, incidence and cost, highlighting dementia’s increasing impact on low and middle income countries (LMICs). It is estimated that 58% of all people living with dementia today reside in LMICs, a proportion that is anticipated to rise to 68% by 2050, driven mainly by population growth and an ageing global population. It is also expected that by 2050, nearly half of all people with dementia globally will live in Asia.

The updated estimates are based on new research led by Professor Martin Prince from King’s College London’s Global Observatory for Ageing and Dementia Care**. These new findings take into account both the growing numbers of older people (population ageing), and new and better evidence on the number of people living with dementia, and costs incurred.

Professor Martin Prince notes: “We now believe that we underestimated the current and future scale of the epidemic by 12-13% in the 2009 World Alzheimer Report, with costs growing more rapidly than the numbers of people affected.”

In light of the findings, the report calls for a specific global work stream from all stakeholders focused on assisting LMICs to develop programmes to raise awareness and improve access to early diagnosis and care. ADI is urging policy makers around the world to approach the issue with a broader agenda and a wider representation of countries and regions, particularly those in the G20 group of nations. A key recommendation of the report calls for a significant upscaling of research investment into care, treatment, prevention and cure.

Marc Wortmann, Executive Director of ADI, commented: “The rising global cost of dementia will pose serious challenges to health and social care systems all around the world. These findings demonstrate the urgent need for governments to implement policies and legislation to provide a better quality of life for people living with dementia, both now and in the future.”

Glenn Rees, Chair of ADI, outlines ADI’s urgent priorities: “We must use the findings of this report to advocate for action in international forums to fight back against the stigma of dementia and encourage the growth of dementia-friendly communities and countries. This action should include timely diagnosis and post-diagnostic support and improved access to support and care, especially in low and middle income countries.”

Professor Graham Stokes, Global Director of Dementia Care at Bupa, supporters of the report, added: “The findings also highlight that the workplace is a unique place to tackle dementia. With almost half of the world’s population in employment*** and people staying in work for longer than ever before, employers have a responsibility to act as they have the potential to make a huge difference. They can support people living with dementia and their carers, and also encourage healthy lifestyle changes which may reduce the risk of dementia.”

You can download the SUMMARY and the FULL REPORT here:

World Alzheimer Report 2015 Summary 2015

World Alzheimer Report 2015

“Nothing about us, without us”

DAI nothing without #35CDB0

Day 5 Dementia Awareness Week UK 2015

Vorstand  HR 1 (2)Although there are seven days in a week,  this will be our final blog for this event. As editor, I have tried to highlight some of the DAI and other presentations from ADI2015, as well as some of the issues we face.

The catch phrase, nothing about us without us, has almost become a tick box for organisations, in the same way person centred care is written up in documentation, but rarely delivered. Far too often, they may include one of us, or use the excuse that they tried to get people with dementia involved, but it is to difficult to find anyone with dementia willing to stand up and speak out or be involved.

The road of advocacy and self advocacy is a really tough one, as often, to have become an advocate, you must be part of a marginalised group, and often one that is being discriminated against, or you have to speak out on behalf of someone who is being treated badly. This means, of course, you often make quite a few enemies as people do not like hearing they are not doing things well in someone else’s opinion, or perhaps the change you want, does not fir their own agenda or business plan.

There seems little point continuing to discuss many things with some people, as being seen as militant or too direct and forceful is not always helpful. However, if an organisation does not like what the advocates who speak up about, either things like their basic rights, or for change they feel could improve the care of a certain group, or positively impact an issue, then, surely, there might be a need to at least look in the mirror, and be open to full and transparent discussions. I continue to speak out for full and proper inclusion of people with dementia, at every level in every conversation about them.

Unfortunately, many of the advocacy organisations in the dementia sector are not willing to accept their consumer voices as motivators for change, even when, for years, we have been telling them the services provided are not working for us, or there are, in fact, not enough services for us or not the services we want. What is the point of being a consumer advocate, if no-one bothers to listen, or more importantly, accept the criticisms and use to as positive fuel to consider change. I’ve been part of many organisations, either employed or as a volunteer, and it is the ones who are able to accept critique well, that have the greatest impact on the lives of real people.

As the life of Dementia Alliance International (DAI) continues, and the authentic voice of people with dementia becomes stronger, working at the global level, on matters than can be impacted locally, seems to be the most productive way to be an advocate. On the way, DAI is providing services and education for people with dementia, that for the most part, advocacy organisations are not providing, or not providing well.

Alzheimer’s Disease International is really listening to us now, and through collaboration with them, in the process, DAI has become the peak body for people with dementia in the world.

It is thrilling to be able to report here that we have been contacted by the Alzheimer’s Society UK to discuss collaborating with them and work together in some way, and I am very much looking forward to meeting with their CEO, Jeremy Hughes, in June this year.

We now all need our own local, state and country advocacy organisations to come on board, and to really listen to us… and do the same. We are not a threat, we merely want to work together.

Working together, we will improve the lives of people with dementia and our families.

It is not acceptable to continue to do anything, about us, without us.

Editor: Kate Swaffer

Copyright: Dementia Alliance International 2015

Ps. I have written on some mildly contentious topics on my own blog this week, including Who am I?, Whose story is it?, Pain vs Suffering, Behaviour Management or Staff Education and Advocacy and activism for people with dementia.

Chris Roberts presents at ADI2015

DAI Board member Chris Roberts presenting at ADI2015 and Marc Wortmann, CE of ADI in the background
DAI Board member Chris Roberts presenting at ADI2015 and Marc Wortmann, CE of ADI in the background

Chris opened the workshop session on Friday 17 April, titled: Involving People with Dementia in Research and Clinical Trials.

I’m humbled and honoured to be a part of this conference and listening to all the great work actually being done on my/our behalf.

You see “I” have dementia, mixed dementia, vascular and Alzheimer’s, but with emphasis that I may “have it” but it certainly doesn’t have me!

Yet.

Who am I? ;

I’m 53 years young, married with five children and two grandchildren; my wife is still my caring wife. I live in North Wales, UK.

Pre diagnosis

For a couple of years before I was 50, I was having problems with scattiness, my memory and getting lost in familiar places, we never drew the dots between myself having a stroke in 2008 and what was happening, lack of education about the dementias.

But I also have a diagnosis of emphysema, so we likened my scattiness to my lack of oxygen and self diagnosed for a couple of years, totally wrongly! 

It was during a regular check up at the doctors that we mentioned this, she said no, no!! 

So the testing began.

My diagnosis only took 13 months, I didn’t mind this because as well as a timely diagnosis it also has to be a correct one.

No support or information was given during this process.

At diagnosis time, just as we were being told, there was actually a knock on the door. The receptionist asked if we could hurry up as someone had been waiting a long time and was getting agitated!

I was given what I call my ‘welcome pack’ and shown the door,

We knew absolutely nothing; we were just left all alone! 

We stood in the car park and cried.

We called family together for a holiday, the last one,

We were grieving and I wasn’t even gone yet.

Total lack of support and information!! 

But I had responsibilities, I am a father husband and grand father, we needed to know more, we researched and trawled the internet for information, but we needed correct information, there is so much rubbish around! 

Dementia is not death on diagnosis

 After researching, we realised it wasn’t death on diagnosis!

I pulled my socks up and decided to look forward now, not back, to embrace my new future.

Affairs were put in order; I even chose a care home for the future.

Then we got help from the Alzheimer’s Society UK, the dementia advisers were great.

We realised how little folk know, 

Everyone has heard the word… “dementia” but most don’t understand what it means! 

We decided to be up front with diagnosis, told everyone, even put it on face-book, I now use social media to help educate others, to spread good info, even started my own information page.

I was feeling empowered again! Worthy!! 

We now meet with our local council services and now advise for them, even started a new social group for all ages and their families

Joined the dementia friends initiative, trained as a dementia champion and with my wife’s help have delivered over 18 sessions over the last 12 months speaking to 300 people about what dementia means. 

I found Dementia Alliance International, who are for and by people with dementia, advocating, conducting webinars, virtual cafes and master classes; I even became a board member ! 

Joined and contributed to dementia mentors, hosting one of their virtual cafes, even started talking about my experience of dementia, after all we are the experts!

They’re now being 6 national working groups of people with dementia around the world with dementia alliance international at the forefront working in partnership with Alzheimer’s disease international. 

What about my family?

That’s me but what about my family? My diagnosis was also given to all my family, even my friends! 

We can’t ever forget that, they will long remember when I can’t.

It can affect them just as much.

As much info and support is needed for them, younger carers especially fall through the net.

My mum in law has recently moved in with us, herself being diagnosed with Alzheimer’s too, one more the wife might need a license?!

But as we’ve heard here today, things are changing and with the continuing support of people like you more people with dementia are also being included in their own decision-making.

Research is being funded better than ever, education is being promoted and stigma is being reduced.

Care and appropriate services are being supplied and more importantly being improved upon, 

But still there is a long way to go yet!

From the bottom of my heart, and on behalf of people with dementia, I thank all who are trying to make our lives better whilst we try to live well.

Thank you very much! 

Getting involved with DAI

Meeting-Clip-ArtEach week Dementia Alliance International has the thrill of new members joining this advocacy and support group, of by and for people with dementia.

As such, we felt it important to focus our blog this week on what services we offer, what we have achieved, and more importantly, how you can become more involved.

We are soon adding a new page on the website called Get involved, with the numerous activities that you can join in, as well as opportunuties to become more actively involved in DAI.

For example, two very new DAI members, Mick Carmody and Gayle Harris, both from Queensland are now regularly co-hosting the new Café Le Brain AUSTRALIA, along with Kate Swaffer.

The next Café Le Brain NORTH AMERICA & UK – Online Memory Cafe in the USA time zone is to be held on and you can register here.

The next online Café Le Brain AUSTRALIA to be held in the Australian time zone now a monthly event is on Wednesday 19 November at 1.30pm AEST. You can register here.

During Dementia Awareness Month 2014, these new Australian members hosted the first Café Le Brain in Australia, which was exciting for DAIs, and I hope exciting for them. Whilst our numbers were low at this first cafe, and there was some confusion about who should register, it was a terrific start.

Celebrating some very good news, we have recently been approached by Alzheimer’s Disease International to collaborate with them as the peak consumer body for people with dementia. We are excited about this opportunity, and thrilled to have their support in this way.

It is especially important for new members, and also for our supporters receiving our weekly blogs and newsletter updates, to see what we have achieved, and I have listed as many as I can remember below.

Since 1 January 2014, we have achieved or are currently working on the following:

  1. Updated website, making it more user friendly and definitely ezasier for peole with dementia to sign up as members.
  2. Our Vision, Values, Missions and Core Beliefs for DAI; of course this may change over time, but we worked hard on these things, and feel they represent what other people with dementia would also want.
  3. Cafe Le Brain, our virtual support groups, now in two time zones.
  4. Active Facebook page, twitter account and YouTube channel.
  5. We are building on the Webinars at A Meeting of The Minds.
  6. We have published a weekly blog since 7 May 2014.
  7. We have a quarterly newsletter, The Advocate.
  8. Membership is in many countries now, and is increasing steadily, and will remain FREE. We need to build on membership in other countries, so they can set up and support new local Alliances for people with dementia in their own countries or regions.
  9. We have an elected Board, although do need more Board members to become more actively involved as a few cannot do all the work on their own.
  10. A memberhsip group of Circle of Friends – members (just a reminder, all people with dementia) who have started meeting to work on projects, e.g. educational resources and material. We love to welcome new members to this group, as well as nominations for teh Circle of Friends and as Board members from those of you who want a more active role in the organisation.
  11. We raised over $6000 in less than five months to sponsor five people to attend ADI2014 in Puerto Rico.
  12. These funds also allowed us to purchase a banner and purchase t-shirts for members and supports, to assist with marketing and fund raising.
  13. Six DAI members presented at ADI2014
  14. We set up and ran a professional stand promoting Dementia Alliance International at ADI2014; this took a huge commitment in time and energy to set up, and to run each day of the conference, but allowed us to highlight not only the abilities of people with dementia, but to network into other countries and organisations.
  15. We hope to raise funds to support people to attend ADI2015 in Perth next year.
  16. Our By Laws are complete.
  17. Our Strategic Plan is almost complete.
  18. Our 501c status as a not for profit organisation based in the USA is now complete: EIN is 27-3538654.
  19. We are in the process of setting up a bank account.
  20. Laura Bowley remains our Executive Director, a person without dementia who provides us with support as a volunteer. Thank you Laura.
  21. We are in the process of setting up a media watch, allowing members to respond to articles in the news, on issues such as the use of inappropriate language.
  22. We ran a very full Dementia Awareness Month program of activities, whoich were very successful. We included four Master Classes, and a Webinar being run in two time zones, as well as our regular Memory Cafés and weekly blog series.
  23. Our newsletter and many other articles have been translated into Spanish, French, Mexican, Japanese, and Bangladesh, and we are currently working with other countries including Taipei, Germany and Croatia.

Looking ahead, we are currently collaborating with others to set up some very exciting projects, as we develop our skill sets and commitment to the fact we can still function, albeit differently to the way we did before being diagnosed with dementia.

We will be adding resources and finding funding, and will achieve our current goals and beyond. We are also collaborating with a number of academics and universities to provide two subjects for universities to incorporate into their dementia courses.

We also are soon to commence work on providing two global resources, available to be downloaded on our website, the first being Communicating with people with dementia, the second being a Language Guidelines document, and intend to get them translated into at least the countries who have Alzheimer’s Associations or Societies.

Until then, you can download the Alzheimer’s Australia guidelines here> Alzheimers Australia Language Guidelines 2014