It also now defines dementia is a condition causing acquired cognitive disabilities.
It is therefore important as an organisation, DAI acknowledges and celebrates this day, as our members, when first diagnosed (even if not visible in the earlier stages of dementia) are living with acquired cognitive disabilities. However, as dementia progresses, our disabilities are likely to become more obvious, athough this seems to be the lens through which dementia is still only being viewed by health care professionals (in spite of initiatives to diagnose earlier) and many in the community (i.e. late stage).
Seeing dementia through the lens of disability helps us to claim our rights, under the Convention on the Rights of Persons with Disabilities (CRPD).
If you go to the United Nations website, you can read more about the theme of their activiteis today. What is very relevant to people with dementia is they are focusing in the morning on Sustainable Development Goals, and in the afternoon on Accessible Cities for All: Smart and Inclusive Urban Planning.
This is relevant, in light of the global campaigns to make our communities ‘dementia friendly’, as what we want has little to do with being friendly, and everything to do with inclusion, and therefore access, including access to adequate health care, and disability support including rehabilitation (cognitive and physical).
On the second half of the page about today on the UN, it says:
The opening ceremony will review the progress achieved, explore ways to further empower persons with disabilities and provide an overview of the international framework of the implementation of the 2030 Agenda for SDGs, in line with the Convention on the Rights of Persons with Disabilities (CRPD). The event will gather Member States, UN entities, civil society organizations, academic institutes and persons with disabilities.
In the afternoon, the commemoration will focus on “Accessible Cities for All: Smart and Inclusive Urban Planning” as key elements to reduce inequalities and empower people to live in accessible, usable and friendly healthy environments. The event will explore SDG11 of the 2030 Agenda for sustainable development by providing space for Mayors, City Leaders to exchange innovative solutions on how to implement the SDGs and to exchange good practices about inclusive urban planning to promote the participation and well-being of their citizens of all ages and abilities.
Afterwards, the event will discuss smart inclusive environment and how to apply information and communication technologies to provide better infrastructure, quality services in a safe accessible environment.”
People with dementia have definitely become empowered, and are working together locally, nationally and globally to ensure dementia is ot only listed on websites as a condition casuing disabikites, it si a condition where we wil, at the time of diagnosis, be provided with adequate disability assessment and support to maintain independence for as long as possible, not just assessment of our Actvities of Daily Living (ADL’s), and which will also include rehabilitation.
Dementia Australia and Dementia Alliance International to globally champion rights of people living with dementia. Dementia Australia has formalised its relationship with Dementia Alliance International and today signed a new memorandum of understanding (MOU).
Dementia Australia CEO, Maree McCabe said the MOU recognises both organisations are aligned in their purpose to promote awareness and understanding of dementia and to advocate for the autonomy, independence and human rights of people living with dementia.
“We share a commitment and vision for a world where people living with dementia are valued, included and receive the care and support they choose,” Ms McCabe said.
Dementia Alliance International Chair, CEO and Co-founder, Kate Swaffer said the organisations would advocate together to expand the awareness and understanding of dementia across the aged care, disability and health care sectors in Australia and on the world stage.
“Together we will liaise on global dementia policy issues, to ensure our policies and programs are aligned to the WHO Global Dementia Action Plan” Ms Swaffer said.
Dementia Alliance International is the peak organisation with membership exclusively for people with a medically confirmed diagnosis of any type of dementia from all around the world.
“As the global voice ofdementia, Dementia Alliance International provides a platform for the many people living with dementia who are capable of representing themselves, or speaking up for those who are no longer able to,” Ms Swaffer said.
“We have members in 48 countries, and self-advocacy is becoming a strong focus, where we work with members of Alzheimer’s Disease International, such as Dementia Australia, to empower others to have a voice.”
Worldwide it is estimated there are 50 million people living with dementia. This number will almost double every 20 years, reaching 131.5 million in 2050.
“According to Alzheimer’s Disease International research, someone in the world develops dementia every three seconds,” Ms Swaffer said.
Dementia Australia is the national peak body and charity for people of all ages, living with all forms of dementia, their families and carers. Dementia Alliance International is the global peak body representing people with dementia.
“Dementia Australia is the first national dementia association to partner with us, and DAI is very proud to be more formally working with them,”Ms Swaffer said.
“It is a natural fit for the two peak bodies to work together to promote awareness and understanding of dementia,” Ms McCabe said.
Dementia Australia is the national peak body and charity for people, of all ages, living with all forms of dementia, their families and care partners. It provides advocacy, support services, education and information. An estimated 436,000 people have dementia in Australia. This number is projected to reach almost 1.1 million by 2058. Dementia Australia’s services are supported by the Australian Government. www.dementia.org.au
Dementia Alliance International(DAI) is a collaboration of individuals diagnosed with dementia providing a unified voice of strength, advocacy, and support in the fight for individual autonomy for people with dementia. The aim is to bring the community composed of those with dementia together as one strong voice to urge the government, private sector, and medical professionals to listen to our concerns and take action to address this urgent global crisis. It is our firm belief that working together, we will identify concrete action for implementation with the international community, and in the process, ensure our human rights are being fully met. DAI is a registered charity in the USA, and the global voice of dementia. https://www.infodai.org
Dementia is a Global and National Health Priority Area
In the last 5-10 years, there has been a lot of interest and work in supporting intergenerational relationships and care for people living in aged care facilities (nursing homes), with and without dementia.
This week, we are pleased to feature a guest blog written by Jeremy Raynolds, who is a third-year psychology student at Washington State.
Jeremy has a strong interest in gerontology studies and often volunteers in nursing homes and care centers. He occasionally blogs about his work and experiences, and gets the help with writing from edubirdie. His aim is to develop a strategy accessible to anyone who has people with dementia in their care. We thank Jeremy for writing this guest blog, and for his interest in gerontology, and particularly in positively supporting people diagnosed with dementia.
Working and supporting people with dementia as a student
“Gerontology is derived from the Greek words geron, “old man” and -logia, “study of”and, as you can guess is the study of the variety of aspects of getting older.
Aging is a natural process that affects everyone, but, of course, every case is unique. In this article, we will touch upon a very specific topic – caring for people with dementia, the type of brain disease that affects thinking abilities, memory capabilities and emotional stability. It is especially challenging, and requires a special approach and set of skills. Today we are focusing on advice for students who are willing to volunteer or do an internship in an Alzheimer’s care center or nursing home that deals with dementia. This is a very noble, yet difficult task that deserves praise as well as support from specialists and society.
Caring for the elderly is not an easy task. You sometimes have to deal with grumpiness, sicknesses, and various emotional and psychological issues. However, it goes without saying that caring for older patients with dementia may be harder. Pressure can build from constant repetition due to memory issues experienced by people with dementia, as well as unstable emotional backgrounds and the fears that come along with the work atmosphere at care centers. So it is extremely important to support and provide reasonable assistance to those students who decide to take up this task.
The disease also raises many social issues, as people with dementia can be isolated and treated unfairly, and the question of human rights arises from the cognitive deprivation aspects of dementia. Due to these reasons, proper care, destigmatization of the problem and acceptance are essential to the issue.
The vital characteristics of caring for people with dementia are compassion, understanding, and patience—a lot of patience.
Try to think of them as people with different processes that they need to go through and do not expect them to act like other older people. They may need more time to make a decision, more time to process some things and they may ask you the same thing repeatedly. But when you recognize where this comes from and make room for a patient and kind response, everything works out perfectly.
Supporting people with this disease can be broken down into small parts. For instance, communication is extremely important – everyone needs human touch and connection, including people who live with dementia. You can find out the topics that interest this particular person and embrace them, even though the conversation might not be as smooth and consistent as usual. But it is a true charity to set aside your frustrations and personal issues and selflessly connect with a person in need of communication.
Of course, it is important to know your limits. Do not make work your entire existence; it puts you at risk of burning out and damaging your own mental and emotional state. Take it slow and remember to take breaks and “switch off” for a while. Refresh yourself with some totally random activity or other to reprogram your mind and body. It could be a close set of exercises or a few pages from a book, a walk outside or a coffee break.
Consider this work as a partnership.
You meet the need for socializing and connection for people with dementia, and they provide you with an infinite learning opportunity.
It doesn’t matter whether you are a future social worker, a psychology student, or a medical student – practice is the best teacher. No matter how many books and theories you have gone through, practical approach grants you with precious skills and knowledge. It is a good reason to be grateful for such an opportunity.”
We have invited Jeremy, and hope he will find time next year to present on this topic at one of our Webinars.
Our November “A Meeting Of The Minds” Webinar is by Associate Professor LeeFay Low fom Sydney University. The topic, Rehabilitation and dementia: evidence & opportunities, will be of great interest to members and professionals, and we hope you will join us.
About the Webinar: The World Health Organisation has defined rehabilitation as “a set of measures that assist individuals, who experience or are likely to experience disability, to achieve and maintain optimum functioning in interaction with their environments”. Research and practice relating to dementia is predominantly focused on prevention, disease-modifying treatment, and care. This presentation will review the current evidence for rehabilitation strategies (e.g. exercise, cognitive training, occupational therapy) in dementia, and outline several ongoing studies. Barriers to rehabilitation for dementia will also be presented.
About A/Professor Low: Lee-Fay Low (BSc Psych (Hons), PhD) is Associate Professor in Ageing and Health, NHMRC Boosting Dementia Research Leadership Development Fellow, and Head of Behavioural and Social Sciences in Health in the Faculty of Health Sciences, University of Sydney. She is a registered psychologist with a PhD in psychiatric epidemiology.
A/Prof Low conducts research that she hopes will make a difference in the world.
Her main areas of expertise are in home and residential care for older people, wellbeing in people with dementia, dementia risk factors for dementia, dementia literacy, and people from culturally and linguistically diverse backgrounds. She is particularly interested in developing and evaluating interventions to improve the quality of life of older people. She has methodological skills in population studies, systematic reviews, clustered randomised trials, instrument development and evaluation, and translation of research into practice.
She has authored over 100 peer-reviewed articles, as well as two books on dementia. She is an active advocate in improving how older people are treated and cared for. Lee-Fay thinks that research is great fun, and even admits to liking statistics.
Wednesday, November 28, 2018 – times (USA/UK/EU/CA):
10:00 am Honolulu
12:00 pm Oregon Portland/San Francisco USA
12:00 pm Vancouver CA
2:00 pm Des Moines/Chicago USA
3:00 pm New York USA
3:00 pm Toronto CA
8:00 pm London/Glasgow UK
9:00 pm Paris, Munich, Amsterdam, EU
Thursday, November 29, 2018 – times (AU/NZ/JP/IND/TWN):
6:00 am Adelaide AU
6:30 am Brisbane AU
7:00 am Sydney/Melbourne/Canberra/Tasmania AU
4:00 am Perth AU/Taipei TWN
5:00 am Tokyo, JP
9:00 am Auckland, NZ
Note: the Q&A session at the end of our webinars are never available publicly, and therefore will not be available after the event. Some webinars are available on our YouTube channel, but not all depending on each presenter, or the quality of the recording.
Following on from the World Alzheimer’s Month series of #Hello blogs, we continue to share our members stories. Peter Berry from the UK has been doing a weekly video podcast about his experience of living with dmentia, now up to his 70th. This one was focuses on the difficulties of a diagnosis, and stigma. Thank you Peter for giving us permission to share your 25th video here.
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
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…
I began writing, blogging, campaigning and then training and mentoring consultancy work after my dad died in April 2012.
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 Dick, Jennifer, 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.
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’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.
Agnes Houston says #Hello, as we continue our series following on from World Alzheimer’s Month 2018, with more stories from our DAI members. Agnes is a long time advocate, and also a board member of Dementia Alliance International. She has campaigned for best practice and improving lives of people with dementia especially sensory issues and Dementia in Scotland and received a lifetime achievement award by Alzheimer Scotland in 2013. In 2015 was awarded an MBE and in 2016 was awarded a Churchill Fellow.
DAI’s vision is “A World where people with dementia are fully valued and included.”
“Cultural competence is about our will and actions to build understanding between people, to be respectful and open to different cultural perspectives, strengthen cultural security and work towards equality in opportunity. Relationship building is fundamental to cultural competence and is based on the foundations of understanding each other’s expectations and attitudes, and subsequently building on the strength of each other’s knowledge, using a wide range of community members and resources to build on their understandings.” Educators’ Guide to the Early Years Learning Frameworkp21; Educators’ Guide to the Framework for School Age Care, p57.
I had just finished presenting on a panel discussion at a Dementia conference. A tall, jovial middle-eastern man in his 20s approached me. We chatted and found we could talk on many topics, so we went for a walk-and-talk. The topic being dementia, and me knowing utterly nothing about his home country, I opened the door by telling how my family handled my paternal grandmother’s senility, and later my Dad’s Lewy Body Dementia.
My grandmother was in her 90s in 1979 when she was abruptly taken from her farm where she’d lived alone since my grandfather’s premature death in 1960. No one explained anything to her or asked what her wishes were. She was tucked away in another city in a nursing home where no one would see her and “embarrass” the family, and that was my parents’ generation’s goal.
To continue the conversation with my acquaintance from a part of the world about which I know absolutely nothing, I simply asked how many first cousins he had, first stating I had 9, they mostly lived within an hour’s drive and I knew all their families.
He threw his head back and had a good laugh. “My family would fill this convention center, and where I’m from – we’re ALL related in some way. I know of over 120 first cousins!” Since my partner passed away during the AIDS epidemic and our foster sons are in their early 40s now and I’ve not had contact with them in years, I have no family other than my birth family and relatives. He found that tragic and shocking. “How do you not kill yourself from loneliness?” I was aghast at his question and fell silent.
In Armistead Maupin’s Tales of the City (1976), Michael Tolliver famously confesses to his hippie friend Mona, “All I really need are five good friends” while he fails over and over (and over) again to find true love. That is part of our culture – many find love in their close friends, forming close, enduring families of friends.
My new acquaintance couldn’t begin to wrap his mind around that, he being from a clan-based culture. So this was the opportunity to ask him if he had any relatives with dementia. I mean, with all those relatives, there mustbe at least a few! He said, “well of course there are some. But you’ll never know who they are. We surround them like the leaves of a head of lettuce, care for them and make sure they live with dignity.”
“Yes, but are their individual rights respected? Are they allowed freedom?” He tut-tutted me the way someone with a British-English accent does.
“You’re trying to understand this through American sensibilities. Turn that off and see through them through my eyes. We never discuss it – we just know they’re losing it, and we deal with it.”
And then he didn’t want to talk about that or anything else any more, politely bade me farewell before we even introduced ourselves strode off and hopped in a taxi.
As of this writing, Dementia Alliance Internationalis active in at least 47 countries and several languages. Our first barrier is the concept of the “Support Group.” Most countries only understand a support group as being AA, and some non-alcoholics in many countries would find it pretty disturbing to sit around at spill one’s guts to other human beings – and have that accomplish anything. But today it is a widely accepted model for recovery in the U.S..
In mental health, vastly fewer support groups exist for persons with mental disease, especially those with severe mental disease. For example, those with schizophrenia, are often not expected or trusted to be able to think or speak for themselves – many are homeless or imprisoned. Support groups that do exist are for the poor families and caregivers who “suffer” silently at their sides (sarcasm). The concept of support groups for persons with any form of Dementia when DAI was first established first was shrugged off, then roundly criticized and now is become an emerging model of living well with Dementia.
For this model of living well with Dementia to continue to proliferate, it can only do so in a context of continuous building of cultural competency. As s DAI embraces persons and groups from other cultures/languages, keeping in mind that a different language is inextricably related to another culture, and not all people who speak a language share a particular culture.
My sister and I visited her friends in Liverpool years ago. I am a polyglot, but I could scarcely understand a word they said, nor they I. They understood my French better than my English. How is this anecdote relevant? For our online support groups to continue to grow in other languages and cultures, we must ask the right questions relevant to others’ cultures and technologies before we begin to extoll the many benefits of DAI.
Do you have access to a device that can broadcast and stream video/audio? Netbooks & tablets start at around $140, have cams and mics. Smartphones are more.
Do you have wifi accessible that supports streaming video?
Is there a quiet place you can use your device privately to stream a chat with others?
Will your family permit you to speak freely online to a group of people who also have dementias?
Culture is: technology, expectations of conduct (profanity, clothing, topics like politics or religion, cross-talk, expression of anger/disgust, taboo topics, observations of religious and civic holidays, etcetera), and certainly how much one discloses in a support group.
For example, in my case I was brought up not to disclose how I feltabout something; that was vulgar. One of my grandmothers was born in the end of the Victorian age in 1894, so she held those values firm. We all have some core values that have more to do with our respect for those who raised than our own beliefs. Those are simply part of our families’ cultures.
DAI does not seek to change other’s cultures. Rather, we endeavor to continuously better acculturate ourselves to persons with dementia from throughout the world. Many of our support groups are cross-cultural. Some are even cross-linguistic as we share the common goal of living well with differing dementias.
It is my personal goal to continue to integrate persons with dementias from cultures speaking the Romance family of languages as I am a Romance Linguist. Many of us who are monolingual are “fluent” in understanding other cultures, ready and able to create a conversation about Dementia which will be of continuous benefit to persons from many diverse cultures. In our support groups, we:
open new channels of Communication, respectful of
diverse Cultures, making
new Connections among persons with dementia and support agencies, often making
Comparisons among ourselves despite the distance, boundaries and languages that divide us, and forming
newCommunities of support, fellowship, laughter, friendship and love.
We do all we can to live well with dementia.
Consider donating to DAI to help support our online Support Groups as we continue to grow throughout the world, fighting the one thing about Dementia that most cultures share: Shame of having a family member with dementia, their forced Isolation and lack of Support and Protection for those living with the disease and their caregivers.
Persons from an Alcoholics Anonymous or a similar background tend to reallyhate cross talk. In AA, everyone gets a turn, and when everyone has finished, then you may have a 2nd turn if there’s time, but you don’t talk back and forth or you are immediately scolded.
Adapted from the World Readiness Standards developed by the American Council on the Teaching of Foreign Languages.
Following our #DAI#Hello my name is blog series for World Alzheimer’s Month #WAM2018, we are continuing with our stories, as we have many more than 30 to share with you.
September was an exceptional month for our members, some whom for the first ime, had been given a voice through these blogs.
Therefore, today, we feature DAI board member and secretary, Eileen Taylor from Australia. Eileen also co hosts the Monday Australian support group. She and her husband Dubhglas are also co founder of a local advocacy group in Brisbane, the Dementia Advocacy and Awareness Team (DAADT) . Thanks Eileen for sharing your story and for all you do for everyone with dementia.
I am still Eileen
Hello, my name is Eileen Taylor. I was diagnosed with Familial Younger Onset Alzheimer in 2009 aged 59. I was the same age my Dad when he was diagnosed with dementia back in the 1980’s. Both he and his brother in the UK died with a diagnosis of Alzheimer’s in 1994.
Back then, Alzheimer’s wasn’t really discussed, and we didn’t know how to recognise the signs. My Dad struggled to focus and sometimes couldn’t remember what happened the day before. His doctor just put this down to being eccentric and told us there was nothing to really worry about.
Throughout his long and distressing struggle with dementia, my Dad regretfully was never told the truth about his illness.
While I am now trying to live well with dementia, it was very different when I was first diagnosed in 2009. Then, I noticed I was becoming a little forgetful, but it was nothing too major. I didn’t really take too much notice until one day I saw a documentary on TV about the genetic link to dementia.
Because of what had happened to my Dad, I thought that I needed to know, so I had a genetic test to find out the truth. Not just for myself, but for my two sons and my grandkids too – I thought they had right to know if the gene was in our family.
At first the doctor didn’t think there was any reason to know, after all I was below the age when most people start to show symptoms. But I pushed for it, and I’m glad I did, because it enabled me to catch it early and to be a part of several clinical trials to find answers.
When the results of my genetic test and other assessments revealed that I did in fact have the gene and had Alzheimer’s, the news was initially “mind-blowing”. I was devastated, it was a “surely not me!” moment. I was only 59. It was the worst thing to happen to me. It was at that moment when I actually felt the pain in my chest after hearing news that broke my heart. On reflection it was like:
“Imagining you wake up one morning and your computer has been switched from a PC to a Mac, and the keyboard is suddenly Azerty. You are now trying to write a paper with that, while your hands are cuffed together, and your head is in a bucket of Jelly.”
Nevertheless, after my diagnosis, I chose to engage in, not give in, but to fight for a cure and to support other people as well as their families living with dementia. I was determined not to remain silent (as what had happened with my Dad) but to speak out and talk to people and help them to understand what it is like to live with dementia.
Parallel to the trials, the Dementia Alliance International (DAI) became my lifeline, an oasis in a sea of medical denial and indifference I had seen from some health professionals. It gave me a voice to speak out and I was accepted unconditionally into the group I joined.
Now, thankfully, I am a part of the DAI Board, serving as their Secretary, Advocate and on-line support group facilitator for the Australian and New Zealand people.
I am also an advocate and co-founder with the Dementia Awareness Advocacy Team (DAAT), as well as an advocate and active participant with Dementia Australia (DA) and serve on several dementia committees.
Doug, my husband has supported and helped me to live positively with my dementia by externalizing it.
I am not the problem, the problem is the problem, and in my case it’s Alzheimer’s dementia.
My dementia externalized is; my “Dark Cloud!” It helps me come to terms, that I am not my Dementia, my Dementia is my Dementia, I am still Eileen.
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.
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.
 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.