Tag Archives: Copyright 2018

The power of our voices

During World Alzheimer’s Month, we featured a daily series of #Hello blogs, personal stories frrom DAI members from around the world. Many reported how educational and helpful they were, and UK blogger and dementia consultant Beth Britton asked for permissio to use some of them in a training session she was hosting. The following is Beth’ s story’.

‘Learning from Personal Stories’

DAI bloggers feature in MacIntyre’s Dementia Special Interest Group Meeting

By Beth Britton © 2018

 

As a former care partner to my dad, who had vascular dementia for 19 years, the work of Dementia Alliance International is close to my heart. So, when one of my social care consultancy clients, MacIntyre, asked me to run a session during their Dementia Special Interest Group meeting on 3 October 2018, my source of inspiration was DAI’s ‘Hello My Name Is’ World Alzheimer’s Month blogs. Kate Swaffer had kindly alerted me to this series of blogs via twitter in early September 2018, and the chance to share these stories further wasn’t to be missed!

Before I tell you how my session went, I thought a quick history lesson might be helpful…

About me

Me and my dad

 I began writing, blogging, campaigning and then training and mentoring consultancy work after my dad died in April 2012.

Initially my inspiration was to share some of the things that had really helped my dad and us as his family, but as interest grew in our story so opportunities came along that have propelled me to where I am now – A Skills for Care Endorsed Training Provider in the UK .

I first met Kate in 2013, having initially connected via twitter (you can follow me on Twitter, and I have met and worked with other DAI members in the UK since.

‘Learning from Personal Stories’

My October 2018 Dementia Special Interest Group Meeting session

Firstly, I should say I am extremely grateful to DAI members Kris McElroy, Dick Watson, Jennifer Bute, Julie Hayden, Carol Fordyce, Phyllis Fehr, Davida Sipe and Nina Baláčková for allowing me to print and share their blogs for my ‘Learning from Personal Stories’ session during MacIntyre’s October 2018 Dementia Special Interest Group meeting. Also, huge thanks to Kate Swaffer for kindly liaising with you all on my behalf – without this combined support the session wouldn’t have been able to happen.

After a brief introduction from me, we watched Kris McElroy’s film . I then picked out a couple of quotes from Kris’ blog, including:

“While I have been adapting, adjusting, and fighting through challenges, barriers, stigma, and stereotypes related to my disabilities since childhood; life with dementia has brought its own unique set of challenges, barriers, and stereotypes. Barriers such as access to resources and quality life/health care options; and challenges with areas such as spelling, driving, comprehension, memory, multitasking, confusion, and navigating day to day life.”

I felt that this was a really important quote because so many of the people with learning disabilities that MacIntyre support have faced similar challenges, barriers, stigma, and stereotypes throughout their lives too.

We then moved into table work. With staff members sat around 5 tables, I shared printed copies of the blogs written by DickJennifer, Julie, Carol and Phyllis, for staff to read, discuss and pick out quotes from.

After 15 minutes we had a feedback session, in which a staff member from each table briefly told each DAI member’s story, and shared a couple of quotes that had stood out in their table discussions.

Along with all of us empathising with the struggles we heard about around diagnosis and post-diagnostic support (one of the great challenges for people with a learning disability is getting a timely diagnosis, and staff being believed when they go to doctors expressing concerns about changes in the person that they are supporting), some great slightly off-topic discussions also sprang up, including about the need to communicate sensitively and compassionately with people who have a learning disability and dementia.

A huge plus in our discussions was having DAI member Tracey Shorthouse with us for the whole of our meeting. When it came to my session, Tracey was fantastic at contributing to the conversations we had about her fellow DAI member’s blogs. Having heard Tracey speak earlier in the day about her struggle to get a dementia diagnosis as a nurse, reading about Jenniferand Julie’s experiences as former healthcare professionals really brought the point home that no matter how much you may know professionally about how health and care systems work, when it’s you who needs the help and support you are often no better off.

We were running out of time after all of these great discussions, but I was able to briefly speak about Davida’s blog and the points about medication, and Nina’s blog made us all smile with her anecdote about potato soup.

Overall, MacIntyre staff were really engaged and enlightened by the DAI ‘Hello My Name Is’ blogs, and sometimes shocked too.

The end of this quote from Phyllis’ blog probably drew the biggest gasp and collective head-shaking of the day:

“It wasn’t till I was 53 that I received a firm diagnosis, after going through a two-day battery of testing. I will never forget that day or maybe I will, but I feel like it has been branded in my head. You see on that day we were escorted into the gerontologist’s office. Once she entered the office, I felt like I no longer existed. She looked at my husband and spoke to my husband. As far as she was concerned, I was not there. She told him that I had “early”-onset Alzheimer’s and that I was still doing well. She instructed him to bring me back when I couldn’t dress myself.”

I know from staff feedback that the session was really enjoyed, and that’s only possible because of the generosity of DAI members in sharing your blogs with us, and for writing with such honesty and candour that means there is so much for professionals to reflect upon.

Everything I do in my work is about learning from the experts: people living with dementia themselves and those closest to them. That is where it all began for me with my experiences with my dad, and I hope that inspired by the fantastic session DAI members supported me to run for MacIntyre’s staff, other training providers and health and care organisations will realise the value of working with the REAL experts in the future.

Thank you DAI.

About MacIntyre

A 2014 MacIntyre Dementia Special Interest Group Meeting
A 2014 MacIntyre Dementia Special Interest Group Meeting

MacIntyre were established in 1966 by Kenneth Newton Wright, the parent of a disabled child, and have grown to become a leading UK charity, highly respected and committed to setting standards and increasing choice. MacIntyre provide learning, support and care for more than 1,500 children, young people and adults who have a learning disability and/or autism, at more than 150 services across England and Wales.  Their diverse range of services includes registered care homes, supported living, outreach, accredited training schemes and lifelong learning services, as well as a residential special school and further education provision. 

I’ve worked with MacIntyre since 2013. In 2016 they were awarded a significant grant from the UK Department of Health and Social Care’s Innovation, Excellence and Strategic Development Fund to improve the care and support of people with learning disabilities who have dementia or are at risk of developing dementia. MacIntyre’s Dementia Project was born https://www.macintyrecharity.org/our-expertise/dementia/the-macintyre-dementia-project/. For readers who aren’t aware, people living with a learning disability are more at risk of developing dementia as they age, and if they do develop dementia, it’s usually as a younger person (under 65 years old) and it often progresses rapidly. Follow MacIntyre’s Dementia Project on twitter here… 

I attend MacIntyre’s Dementia Special Interest Group meetings  which are held three-times a year every year.

I’ve introduced many people living with dementia to MacIntyre for them to come and speak about their experiences, ensuring these meetings remain rooted in personal stories. Dementia Special Interest Groups are attended by around 30-50 staff from across MacIntyre, along with guest speakers and sometimes other individuals with professional or personal interest in the synergy between learning disabilities and dementia.

Special thanks from DAI to Beth Britton, and to MacIntyre and their team for engaging with our members in this way.

DAI in Chicago #1

Many of DAI’s members were in Chicago this year for ADI’s longest running international Conference on dementia.

We are proud of all of our members who presented at the conference, whether as invited Plenary speakers, as part of DAI’s panel session or in the concurrent sessions.

Everyone did a truly amazing job.

Or, like one of DAI’s co founders, John Sandblom, who presented in the Opening Ceremony! Our blog today is of Johns speech, and we thank him for representing us all so very well.

Johns speech notes are available to read below, although he did also ad lib quite a lot!

His slides are available here…

Improving quality of life for people with dementia

Slide one: Thanks to ADI for the invitation to be part of the opening ceremony for their 33rdInternational conference, and for sponsoring our stand in the Exhibition Hall. Thanks also to Alzheimer’s America for co-hosting the event.  When I first met Mr Harry Johns, the CEO of Alzheimer’s America, he said, please just call me Harry!

My sincere thanks of behalf of DAI to the Alzheimer’s Association of America for co hosting this event, and thanks also to the LEAD coalition for their sponsorship supporting our members to attend. Special thanks also to DAI members for their hard work in fundraising for us all to be able to attend this event.

As one of eight co founders of DAI, I am honoured to represent our members today, and to have been invited to speak.

DAI is an organisation which now focuses on many things, but our primary focus is on improving the quality of life for people with dementia and their families, and advocating for them globally for the realisatin of our human rights.

Slide two: This slide is one of DAI’s graphics, and is a global overview of dementia – based on data from ADI’s World Alzheimer’s Report in 2015, and the data on the WHO website this year.

Slide three: Dementia Alliance International is the global voice of dementia, and is a registered non-profit organisation whose membership is exclusively for people with a confirmed diagnosis of any type of a dementia, whose membership is now represented in 47 countries.

We seek to represent, support, and educate others living with the disease, and the wider dementia community. DAI is an organization that strives to provide a unified voice of strength, advocacy and support in the fight for individual autonomy, full and equal inclusion and improved quality of life, empowering people to live with dementia, not only die from it.

DAI has been in a strategic partnership with ADI since 2015, and we thank them for their ongoing support.

Slide four: The power of what DAI does is enormous and it helps improve the quality of life for  our members.

Slide five: DAI is very proud to it’s YouTube channel was listed in the top 20 dementia channels in2018.

Then briefly discuss how these platforms support our members through global online conversations

Slide six: DAI has made their global focus about campaigning for human rights and access to the CRPD at organisations such as the United Nations, Convention of the State Parties on the Convention of the Rights of Persons with Disabilities and the World Health Organisation.

Our mission is to empower people with dementia to live more positively with dementia, and to demand quality health care and disability rights. To fulfil this mission, we work with governments, other organisations and individual members of civil society to create change in programs, practices and policies that affect people with dementia and their families, now and into the future.

It is imperative there is NOTHING ABOUT US WITHOUT UT, and this is our undisputed HUMAN RIGHT.

Slide seven: DAI wishes everyone a successful and enjoyable conference.

Thank you.

John Sandblom
Co-founder, Board member and Treasurer
Dementia Alliance International

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.

Kris McElroy, 33 years old, shares his story of dementia

This week DAI features a story of one of our younger members, 33 year old Kris McElroy. As an organisation, we love supporting him, and really enjoy his company in our support groups and online meetings and cafes.

Some of us with younger adult children also find it a little confronting, as we cannot imagine how we would feel if it was one of our own adult children. This must also be how older parents feel of their adult children, diagnosed in their 40’s and 50’s.

Thanks to DAI board member and co-founder of ODAG, Phyllis for supporing Kris to share his story with us all. He is being profuled for the Glboal Disability Summit in London soon as well. We lovingly call him ‘Smiley’, as he has a truly radiant smile, and is a joy to be around.

Thanks Kris, from everyone at DAI for sharing your deeply personal story.

Kris McElroy: My Dementia Story

These days it’s easier for me to remember my birthday than my actual age. October 31, 1984. My cognitive abilities have changed. Numbers get to me the most. I can state a date or the time, but I struggle with it’s meaning especially in relationship to other things such as a how much time I have to get somewhere or return a form. Even when I am trying my best and I think I got it, but yet somehow I frequently seem to miss something and I just can’t figure out what it is.

People these days see me walking with my walker, then here me speak and it is assumed I am more likely to have a caregiver next to me than a friend; that I was born this way and am fortunate if I graduated high school; and that I can’t answer my own questions. I know the look and awkwardinteraction all to well of people not knowing how to interact with me. It’s not like I haven’t spent my entire life trying to get people to see my abilities not my disabilities. I was born with a progressive neuromuscular disorder – still the exact type and cause unknown. It effected me in a way that was visible every time I spoke and moved. It is still amazing to me how stigma; stereotypes; and discrimination mixed with lack of awareness, knowledge, understanding, inclusion, and accessibility impact one’s self image and quality of life.

For the longest time I thought for me to be visible, to have a chance, to be seen as human; I had to do my best to be as “normal” as possible. Since, I couldn’t hide my disabilities on the outside, my mind was my gift. My mainframesuper computer that could keep track of everything, my coping mechanism, and also became my hope for the future. Once I had a PhD, someone like me could make it in this world. A PhD would make my disabilities disappear and allow people to actually see my abilities first. It was always on my radar that I won’t have a voice until I earn my PhD. Either a PhD or find a cure for my disabilities. Never once was dementia on my radar. Never once did I think I my mind would change how it is able to function within the world around me. Why would it be, everywhere I looked it was described as the stereotypical old persons disease. I had defeated so many odds and I earned B.S in Psychology, a M.S in Multidisciplinary Human Services. I was in my second year of my Ph.D with a 3.8 average. I had challenges all my life, but I always bounced back or found a way. Until the challenges started becoming more noticeable and it took longer navigate things that were once quick and easy.

I showed signs of what was called “mild to moderate neurocognitivedisorder” in 2015. I don’t remember how old I was, but I still have the report from the testing. Yet, as with most things, the doctor explainsthe results, gives a copy, and then you are sent on the way to continue life.  So, I did. I was used to this. What I wasn’t used to was the changes I experienced in spelling, ability to edit, ability to comprehend things, keep track of things, navigating, and the level of confusion. They said I was just young, it was just stress, and with rest it would go away. My whole world was changing, and the challenges were increasing. I didn’t know what was happening to me, it was frightening, and it was effecting my functioning. So, my neurologist referred me to testing again. I remember my sister talking about her concerns and mentioning sundowners to the neuropsychologistdoing testing again last summer, the doctor laughing, and then the doctor’s apology and deep concern when she shared and explained the resultsin June 2017, the results that the test results show I have dementia.

Since then, it has been a struggle to get people to believe the diagnosis or to know how to help, and how to find my way – a new way of life.When trying to get services it felt like I had to give up my quality of life in order to have help. That was a very stressful and frustrating process. The only other option given was to go into an assisted living. My sister has been the one person there constantly through it all and it has taken a toll on her too. We both just wish there were more resources, options, services, support. Her unconditional love and support a bright light in my everyday new world.

It’s coming up on a year since the diagnosis of dementia. It is still not clear which type of dementia it is or if it is separated or connected to my other medical conditions. Life looks very different from what it used to. People have come and gone, new faces have brought a sense of joy and hope never imagined at the time of being diagnosed. It was hard to know what to do, what to feel, how to move forward. I spent a lot of time trying to “keep up with the joneses”, but each time that made my symptomsworse. So, I traded in pursuit of my PhD for discovering new ways to help others, engage in my community, explore my talents and share my gifts.Alongthe way it became about just finding a way each day to take it step by step and live well each day whatever that may look like at any moment within any day. Quality of life, according to what that means to me. So, I have adjusted and adapted many things, and as challenges arise or shift, adjusting and adapting occurs time and time again.

Still as with other medical conditions and other things across my life, dementia is a part of my story, but it is not all of my story. It is a part of who I am, but it is not all of who I am. My age does not determine whether I have dementia. My age just means at this point on my life journey, I am a 33 year old chef, artist, writer, volunteer, educator, Special Olympian and athlete, with dementia and other health conditions who has good days and bad days determined to live life well and each moment to the fullest.

 

 

 

The positive impact of DAI

Kate Swaffer gives her keynote presentation at the WHO Ministerial Conference on Global Action Against Dementia, Geneva. Tuesday 17 March 2015. Photo by Violaine Martin.

Dementia Alliance International is the peak body for, and the global voice of people with dementia, with members from 47 countries, starting with only eight co-founders in 2014 from three countries.

As we head into next week, where as Chair & CEO I am again representing DAI at the World Health Organisations  Seventy First World Health Assembly, it is useful to be reminded of where DAI started, and the impact DAI has had, and continues to have on its members and on the world.

The World Health Organization (WHO) is a specialized agency of the United Nations concerned with international public health, and  is a member of the United Nations Development Group.

Whilst others spoke or wrote about human rights for people with dementia before March 2015, it was in Geneva in March 2015 when as DAI’s then Co-Chair, and as an invited speaker, I gave a keynote speech on Day 2 of the WHO First Minsiterial Conference on Dementia.  It included human rights and the CRPD in my three demands, and this seems to have had a snowball effect of ensuring the whole global dementia community has moved further away from rhetoric to more tangible action.

Action is important, especially as the United Kingdom has rebranded their Dementia Awareness Week to Dementia Action Week this coming week.

The eight co founders of DAI had high aspirations; they wanted to advocate for, but more especially to empower others with dementia to become self advocates, and to live more positively in spite of dementia, not only advocate for themselves.

Thankfully, many more people are active as advocates today, than when DAI started, and often we are told it is because of having been a member of DAI, and finding out there is still a good life to be lived, alongside of, or even in spite of dementia. It is  a different life than the one we imagined before dmentia, but it is still possible to live positively and contribute in meaningful ways to society. That is, in fact, our basic human right.

One great example of DAI’s positive impact is Mary Radnofsky from the USA, who has become very active since being empowered initially through joining DAI, to ‘live her own life again’. In August 2016, she wrote, “… I was reminded of how much you turned my life around when I first met you.”

Through her involvement with DAI activities, such as being funded in 2016 to represent DAI at two events, one in New York where she read out a three minute DAI statement, and the other the Social Forum in Geneva,  both funded by DAI to represent us all. She was also funded by DAI to attend two International conferences (ADI Budapest and Alzeimer’s New Zealand), she has found a renewed purpose.

It was initially through attending DAI’s weekly online support groups, and a lot of one to one mentoring and support that Mary became so actively involved with living again. She has since moved on to other missions and organisations, but it is exhilerating to see her, and so many others living positive and active lives again.

Many, like Mary, have been ‘kickstarted’ to reclaim living their own lives again, albeit often with new directions and purpose since their diagnosis of dementia, but largely due to joining DAI. Our peer to peer support groups are very powerful in healing, in helping us make sense of dementia. Finding support from other like minded people, facing the same disaease or situation is empowering.

Mary once wrote in an email to me (3 September 2016) stating, “I may not be an old friend yet, but you’re the most important new friend to me”, and she again wrote to me (30 October 2016) after attending the Social Forum at the WHO in 2016:

I hope that your readership will benefit in many ways, since we wish to share the knowledge we gained from participating in the UN Social Forum as representatives of Dementia Alliance International. This was an unprecedented (and exciting!) opportunity to be part of a global attempt to improve the lives of people with dementia.

Such is the impact of DAI; empowering  others to reclaim their own lives.

Most of all, DAI teaches others that they can ‘live with dementia, and do not need to just go home and wait to die from it’, as so many are still being advised to do.

We may not all stay in close contact forever after getting to know each other through DAI, but that is human nature.

DAI is proud of where it started, and what it has achieved in the last  four years and almost five months, but we are also often exhausted. As an organisation, we have made a significant impact globally for a human rights based approach to dementia that includes disability rights, including rehabilitation, and for recognition and full access to the CRPD, CBR and SDG’s.

Our current 2018 board and Action Group is hard at work, making an incredible commitment to all of our members and the global dementia community, and I thank them all, on everyone’s behalf.

I’m planning to publish a daily blog throughout the Seventy First World health Assembly this week, to keep you all up to date.

Kate Swaffer, DAI Chair, CEO & Co-founder

REMINDER:

For new DAI members or supporters, we highlight the DAI sevices and activities below. DAI is run by people with dementia, for people with dementia, with very limited funds, operating from an annual budget of less than $50,000 per annum, and still without any paid staff.

Free services for members include:

  • Free membership
  • Weekly online peer-to-peer support groups
  • Buddying/mentoring of individual members as members are available
  • Online discussion forums
  • Support groups for people with more advanced forms of Aphasia, as requested
  • A monthly online Cafe Le Brain and Open members meeting and monthly webinar
  • Opportunties to get involved though our Action Group
  • Support to write and submit abstracts, to attend conferences
  • Bursaries to attend selected events, as fund raising permits

Services for members and the global dementia community of care partners, academics and professionals:

The economic and human cost of dementia

There is no doubt there is an enormous economic cost to dementia, not only to the person diagnosed, but also to their care partners, families and support persons (if they are lucky enough to have any), and to the health care sector and our governments. Our latest graphic clearly highlights this, and is based on data from the World Health Organisation (WHO) website published last year.

Apart from the economic cost of dementia, there is a significant human cost to this disease, and you can find many blogs, published journal articles, media stories (print and digital) and books on this, written by professionals, academics, care partners and yes, even many people with dementia.

Too often, the person is not seen, and only the symptoms are. Our deficits are focused on, and we don’t receive appropriate disability support nor recognition for the assets we have retained. These are often completely ignored. It is why we also campaign globally for our human rights for better support and services. We must also be supported to live more positively with dementia, from the time of diagnosis.

One of DAI’s goal is to empower other people with dementia to live more positively with it, and as such, try and reduce some of the human cost of dementia. In doing this, we promote engagement, peer-to-peer support and participation at events and educational webinars, albeit mostly online, for our members and also for the wider dementia community.

Most of our members, when they first join DAI have been advised to get their end of life affairs in order, and often, even to choose a respite day care centre and nursing home. When that happens, most people (and our families) spiral into a dark and depressing place, and become fearful and afraid of what lies ahead.

Jerry Wylie, our Vice Chair made a plea on Facebook on March 31, 1:30 PM, as follows:

“Will you take the time to read this to the end? It’s is not about me and never will be…. I wake up every day praying, that what I managed to do yesterday might make a difference in the “lived experience” for the “people” being diagnosed with dementia today and tomorrow.

Globally there is:

  • 1 diagnosis Every 3 seconds
  • 1,200 “people” diagnosed Every hour
  • 28,800 “people” diagnosed Every Day
  • 876,000 “people” diagnosed Every Month
  • 10,512,000 million “people” diagnosed Every Year

Unfortunately, “people”, society and governments seem callous and unwilling to support simple, cost effective improvements to our “lived experience”.

They prefer spending Billions upon Billions every year on finding a magic cure, whilst the largest pharmaceutical companies in the world have abandoned research due to their failure to get positive results.

In the meantime, nearly nothing beyond lip service is being done or invested in what actually helps us that are diagnosed.

The result is Needless & Unnecessary suffering for countless millions of “people”.

Dementia Alliance International “goes beyond lip service” and is changing “peoples” lived experience every single day but, nobody seems to want to help us financially. I guess it’s because we all have Dementia?

I imagine nearly every person who took the time to read this post can afford to donate “$10.00 A MONTH” so we can reach and offer weekly peer to peer support to the 10,500,000 million “people” diagnosed every year.

Here is your opportunity to help us help these people! Please click on this link and give as generously as you may. If you don’t, who will? $10.00 per month.”

THANK YOU JERRY FOR OPENING YOUR HEART TO US ALL

Happy 4th Birthday DAI

On January 1, 2018, we at Dementia Alliance International celebreated our fourth birthday.  We have definitely come a long way following the aspirations of our founders, and although we have achieved quite a lot, DAI still has much work to do. We welcome you to join us in any or all of our work, and can be contacted here.

As we have many new members who may know very little about us, our first blog for 2018 is to share a piece added to our Facebook page, titled “Our Story”, which you can read in full below. There is a lot of other historical information which one day we will collate and publish, but for now, this is who we are:

Dementia Alliance International (DAI) is the world’s leading organisation exclusively for people diagnosed with any type if deMEntia[i]. It is an advocacy and support group of, by and for people with deMEntia. We are “the global voice of dementia,”, currently representing 44 countries. DAI is a 501c3 registered charity in the USA.

DAI’s vision[ii] is “A world where people with deMEntia are valued and included”.

DAI started instinctively, after many years of discussions with organizations and then others diagnosed with deMEntia, for the purpose of self-advocacy. When our founding members[iii] were each diagnosed with dementia, they individually experienced “the degenerating sense of ‘nobodiness’”[iv] that civil rights leader, Martin Luther King, Jr. had already recognized in another disenfranchised group, the mid-20th century African-Americans.

From day one of our organisation, we have had Margaret Meade’s quote on our website, and we continue to work hard to prove this to be true:

Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has. 

Collectively, we at DAI realised we had to struggle with multiple challenges: not only medical, but also many based on social stigma and discrimination, related to changes to our cognitive ability. So we began to articulate the unfair, hurtful, de-humanising injustices imposed upon people with deMEntia.

The task of speaking out against people causing us harm is complicated (and sometimes precluded) by the fact that many of them are well-intentioned medical staff, service providers, advocacy organisation and close friends or family who are also often our care partners[v], but who may be ignorant, unwilling or unable to take the time to find out our wishes and needs. Although we are grateful for the support of family and friends, we have sometimes been demonized for needing them.

We have also been demonized for not needing them, and for daring to live positively with deMEntia.

People with deMEntia historically are written about as if we “suffer” from it, and are labelled a “burden” to society and have been labelled with all manner of other disrespectful terms. We ask others to use respectful language[vi][vii] when talking to us, or when or writing about us.

What we suffer from is the dehumanizing language many use to refer to us, and “the worst care in the developed world.”[viii]

We at DAI therefore believe it is imperative to change misperceptions about dementia, address stigmas associated with it, discourage the detrimental psychological and physical abuse of people with any disAbility[ix], and demand that the voices of people with dementia be included in decisions directly affecting us.

The misguided under-estimations of our potential continue to create oppressive and humiliating barriers to our full engagement in society. Some of us have even been publicly accused of being imposters, on the grounds that no one with dementia could address an audience of professionals at an academic or medical conference, or live positive and productive lives. Perhaps the worst myth we experience is that others expect that people with deMEntia will go from diagnosis immediately to end stage dementia. This myth is endemic.

One DAI co-founder, Kate Swaffer is regularly quoted saying:

“There is a systemic and gross underestimation of the capacities of all people with dementia, even in the later stages of the disease.” 

Hence we have begun to individually and collectively advocate and educate more enthusiastically, locally, nationally and internationally, at professional conferences, and in the vast online communities we have built.

We are dedicated to empowering all people live a better life with dementia, and not just to die from it.

We advocate for our rights of equal and full inclusion in public spaces and activities; we educate the public on our human-ness in the face of cognitive disAbilities, so that we are not reduced in legal or social status. We seek to live well (just as all people do – that’s the point), to be valued for who we still are, and to be included as equal citizens.

Our global focus has been on human rights and disAbility rights, and we continue to work with organisations such as the World Health Organisation (WHO), the United Nations, the Conventions Of State Parties and others, to ensure that since the WHO Global action plan on the public health response to dementia 2017 – 2025[x] was adopted, national, regional or local dementia plans will include human rights.

This is why we continue to advocate at the grass roots level, and have become activists in the global space, for better care, to ensure deMEntia no longer receives the worst care of any disease in the developed world, or indeed, anywhere in the world.

References

[i] We spell deMEntia like this, to highlight the person, not the disease

[ii] Dementia Alliance International, 2017, About DAI: Vision, https://www.dementiaallianceinternational.org/about-dai/vision/

[iii] Founding members: Kate Swaffer, the late Richard Taylor, Amy Shives, Susan Stephen, the late Dena Dotson, Steve Ponath and Janet (Pitts) Ford.

[iv] King, M.L., Jr., 1963, “Letter from a Birmingham Jail”, http://www.africa.upenn.edu/Articles_Gen/Letter_Birmingham.html

[v] Care partner: often referred to as carers, caregivers or significant others. We use the more empowering term, care partner

[vi] Dementia Australia, 2017, Dementia Language Guidelines, https://www.dementia.org.au/resources/dementia-language-guidelines

[vii] DEEP, 2018, Dementia words matter: Guidelines on language about dementia, http://dementiavoices.org.uk/wp-content/uploads/2015/03/DEEP-Guide-Language.pdf

[viii] The Organisation for Economic Cooperation and Development’s published report of the world’s 38 richest countries (OECD, 2015, Addressing Dementia: The OECD Health Policy Studies, OECD Publishing House, Paris).

[ix] We spell disAbility like this, to highlight the Abilities people with dementia or other disAbilities we retain.

[x] WHO, 2017, Global action plan on the public health response to dementia 2017 – 2025, http://www.who.int/mental_health/neurology/dementia/action_plan_2017_2025/en/