Category Archives: Support groups

#Hello, my name is Valerie Schache

Special thanks to DAI member, Valerie Schache for saying #Hello today, the continuing blog series we are publishing for Dementia Awareness Month/World Alzheimers Month. #WAM2019

Image source: Valerie Schache

Hello my name is Valerie Schache (Val). I’m 67 and I live near Ballina NSW Australia. I have dementia and I continue as the long term care partner for my husband with complex needs since 2004 . I was diagnosed August 2015 when I was 63. I was not supported, just given a dementia drug and ‘bye’. I’m still not tagged; I don’t fit the requirements for NeuRa Frontier etc and am left to my own devices to find a way through the minefield of deficits.

My paid skills were as acupuncturist physiotherapist including complex pain in de-mentia aged care. I’m also a life time farmer. I thank my country upbringing and wise parents who included me in ‘Why is this so’ type of discoveries. I have massive cognitive reserves to cope with the diverse defi-cits says my neuropsychologist assessors. We pioneered in farming and I in allied health and I now pioneer best health practices in the dementia space. 

I Thank God for DAI [Dementia Alliance International]. I was unravelling – not supported – not being believed; stigmatized and isolated to near oblivion and self harm.

My first DAI zoom in 2016, with a mob of diverse people globally with dementia—I laughed for the first time post diagnosis as I participated; I didn’t have to pretend in this group. I was encouraged to seek the latest ideas and I improved cognitively with the Bredesen type protocol. I then got angry that the ‘establishment’ weren’t right, that nothing could change a dementia journey. I became motivated enough to give back and educate for inclusion of my dementia disability—my human right; for suitable rehabilitation to keep me well and kindness. I have pre-sented globally nationally and now locally. Facebook has been my ‘work’ pre-dementia so I now also have an active group ‘Val’s journey –dementia is a word not a sentence’ and comment often on other sites. I am gifted at reading research papers and gleaning the nuggets of change for the better from diverse sources. 

Advantages of dementia: yes, there are some.

I’ve found who my handful of friends really are. My personality type changing deficits means I’m now stronger minded. opinionated; my language is colorful, pithy and sometimes to the point. My ‘bull-shit’ meter is accentuated and I certainly won’t be patronised or treated as less because I have a neurodegenerative disease. I tackle things from the front foot.

Yes I can only now do one thing at a time– but then so do most men. Passionate, fearless bold as a hyena I help tackle issues especially if injustice is involved. I can still read a scientific paper of any genre and give you back six points in plain speak to any audience. My considerable savant knowledge is exposed and I’m well read. 

Disadvantages of dementia: yes!

In my ‘bestment’s’ words ‘It’s a pain in the ‘butt’ —I want my old Val back’ – it wont happen this side of eternity but I’m committed to her and we support each other and its ongoing. We are a great team. I struggle to be OK with the flamboyant new me. I have constant grief as I have brain ‘rat gnaws’ and I wonder what’s gone this time and can I get around it!

I hate having disturbed bodily functions; to always be reminded to remember what I need to take especially if I am distracted. I hate needing to pace myself, and accepting increasing support from others.

To be told ‘you don’t look like you have dementia’ – deep breathe Val– that is such an insulting reflex comment—one you would not say to someone with diabetes etc.

I have a DNR bracelet and all our legal affairs are in order so I don’t have to think about that part of the future except with joy at going home. 

I know dementia’s for over fifty years, observation and then worked as an acupuncturist physio for 32 yrs; a decade in a locked dementia ward and since 2005 have supported dozens of friends to die with dementia. But I say dementia should be rare—not an epidemic. 

What’s changed since the 1950’s?

Lets consider plastics, diesel fumes, atomic bombs, margarines and cholesterol issues/reduction and less sleep /increased stress and now obesity. It’s onset can be slowed even preventable with diet, BP/ Weight control. I say ‘If great grandma wont recognize it , its not food’ e.g. margarines. Hundreds of us in dozens of countries are creating a quiet revolution of change- confounding the ‘experts’ by reversing /slowing dementia– bringing hope to those able to follow a personalized precise protocol.

Back to basics of having health gut biomes for a healthy brain. Removing allergens including foods and environmental toxins especially mold. Team Val use hair analysis blood tests supplements and other hands on best practice to improve me holistically. Being mindful, stress controlled, sleeping soundly, very kind to yourself and at peace with those around you. Live in the moment as it is your pre-sent. I have hope, I have significantly improved in many markers since 2015 and I have dementia. 

Final words…

Its not the future I would have chosen, but we are making the best of this deal and giving back . We laugh and love freely. I aim to ease the life of all the other thousands pre and post dementia diagnosed. I’ve always smashed ‘glass ceilings’ so I’m breaking down the myths /assumptions about de-mentia, boldly and in every avenue presented to, or created by me. 

Don’t be like dementia, it doesn’t discriminate, it is a disability, and it is unkind. Be aware not to discriminate, be inclusive and be especially kind to all, and do everything to slow or prevent the onset of dementia for your own sake. 

Valerie Schache © 2019

Please help us support more people with dementia to share their stories and live more positively by donating or partnering with Dementia Alliance International.

Cultural Competence and Dementia by Dr David Paulson

Embracing Cultural Competence whilst Changing the Conversation on Dementia

By David Paulson © 2018

“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.

Image source: David Paulson

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.

For example:

  • 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[1], 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:

  1. open new channels of Communication, respectful of
  2. diverse Cultures, making
  3. new Connections among persons with dementia and support agencies, often making
  4. Comparisons among ourselves despite the distance, boundaries and languages that divide us, and forming
  5. newCommunities of support, fellowship, laughter, friendship and love.

We do all we can to live well with dementia.[2]

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.

[1]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.

[2]Adapted from the World Readiness Standards developed by the American Council on the Teaching of Foreign Languages.

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Hello, my name is Eileen Taylor

Eileen with her husband Dubhglas presenting at the STRiDE Workshop in London 2018

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.

Eileen Taylor © 2018

DAI’s vision: “A World where people with dementia are fully valued and included.”

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Dementia as a Cognitive Disability

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

Todays article follows on from yesterday, also written by DAI member and a human rights consultant, Professor Peter Mittler.

It is a detailed and reflective insight into the importance of seeing Dementia as a Cognitive Disability.

Dementia as a Cognitive Disability

By Peter Mittler [1]

The United Nations recognises dementia as a cognitive disability.

Why are governments and professionals so slow to accept that dementia is a disability like any other and that people affected by dementia have the same rights as other disabled people under the United Nations Convention on the Rights of Persons with Disabilities?

The CRPD is now ten years old.  Why has it taken people with dementia so long to demand their rights?

Dementia was not mentioned by any of the speakers or the 800 delegates from all over the world at the recent Global Disability Summit organized by the Department for International Development (DfID), the government of Kenya and the International Disability Alliance.

Three of us with dementia (Peter Mittler, Howard Gordon and Nigel  Hullah) sent in questions but they were not chosen for discussion.

I was diagnosed with Alzheimer’s Disease 12 years ago but I am still me.  Much worse than my Alzheimer’s is severe deafness which makes it difficult for me to use the phone or hear what the person next to me in a noisy restaurant is saying.

I have worked in the disability field since the 1950,  first as an NHS clinical psychologist and then as a university teacher in psychology and education and researcher in the social sciences. I have also been active in the British Psychological Society, most recently in my new role as ‘a psychologist living with dementia’.

My priority for some years has been a commitment to human rights and social justice for all disabled people, particularly those living with Alzheimer’s and other dementias.

I started working with International Disabled Persons Organisations in in 1979 when the UN was taking advice on the 1981 International Year of Disabled Persons and UNESCO was launching a 5-year programme on what we would now call inclusive education.

My most vivid memories come from the founders of the disability movement who insisted on co-production of policy with ministers and officials. Most of the pioneers were men in wheelchairs demanding access to jobs, buildings and documents.  The strapline of ‘Nothing About Us Without Us’ was launched in the 60s and has now been extended to 50 million people living with dementia world-wide.

Life in Alzheimerland is very different.

Most professionals are respected as experts.  Conferences are polite and collegial, despite evidence of deteriorating services and now an NHS and care system on its knees for human and material resources.

The older we get, the higher the risk of one or more age-related illnesses. Some are more at risk than others: it helps to be married and have a family; your risk is lower if you lead an active life, meet friends, eat healthy foods, go easy on the alcohol and take a lot of exercise because the brain needs blood to activate neurons to make connections with other cells.  It also helps if you’ve had a good education and speak a second language.

Being given a diagnosis of dementia can be a traumatic experience.

Some people have cried for weeks or can’t sleep for worry about what is to become of them.  Others are asked to hand over their driving licenses or to stop work and take out a Power of Attorney for when they lose capacity. Many have reported that friends and neighbours cross the street to avoid them because they don’t know what to say. The fear and stigma around dementia leads to social isolation and from there to apathy and depression.

The only global self-advocacy movement is Dementia Alliance International.  

Most Board members are under 65, as are all those who have written books about their experiences – the latest is Wendy Mitchell’s highly readable Someone I used to Know (2017).

Most of the advocacy has come from people with younger onset dementia – around ten percent of the total.

Britain will soon have a million people living with dementia; many more are directly affected by dementia, including care partners and relatives. There will be 75 million by 2030 world-wide and we are already being left behind in the UN’s 17 Sustainable Development Goals.  Much of the increase will take place in Low and Middle-Income Countries where diagnosis is a rarity.

People living with Alzheimer’s don’t usually think of themselves as disabled or as grey panthers.  They want a quiet life and to follow their interests.

Action is needed because the OECD has stated that ‘people living with dementia receive the worst care in the developed world’ (2015).

Alzheimer’s Disease International and the World Health Organisation has estimated that one person with dementia is being diagnosed with dementia every three seconds. The cost of dementia is now $1 trillion.

The Alzheimer’s Society UK used data collected from NHS Trusts under the Freedom of Information Act to establish that the chances of falling while in a general hospital are twice as large as in other over 65s and that thousands are being discharged between 11pm and 7am because the beds are needed by other patients. In this country diagnostic rates vary considerably even within a conurbation the size of Manchester but are much lower in Low and Middle Income countries where the condition is often seen as normal ageing.

Although the United Nations Human Rights Bodies recognize dementia as a cognitive disability, there is little evidence that people with dementia are being consulted or involved by their governments in planning services when a country is implementing the CRPD, as required in CRPD Article 4.3. This amounts to systemic – if unintentional – discrimination by their government.

Over a year ago, the World Health Organisation launched its Global Action Plan for a Public Health Policy in Dementia, together with a parallel plan for Mental Health.  Unfortunately, very few governments have taken any action to use it – and that includes NHS England and Dementia United.

To end on a positive note: here are the recommendations for a Rehabilitation Pathway made by Dementia Alliance International to the CRPD Committee in 2016.

Rehabilitation should begin at the point of diagnosis when the  doctor giving the diagnosis introduces a home visitor who will visit the person or the care couple as the link to community supports and services.

The home visitor can be a health or social care professional who visits the care couple to discuss their priorities.  Their task is to try to arrange support from health and social care from  the voluntary sector. These might include an occupational therapist, physiotherapist, speech and language therapist, clinical psychologist and social worker: it depends on the needs of the care couple and other members of the household.

Utopia?

Not at all: something like this exists in some parts of the country.

These are islands of excellence in a sea of poor or non-existent post-diagnostic support.

Peter Mittler © 2018

[1] Professor Peter Mittler, CBE, FRSA, MA, M.Ed, Ph.D (Psychology);  Clinical Psychologist 1954-1963; Lecturer in Developmental and Abnormal Psychology, Birkbeck College, University of London (1963-1968); Founding Director Hester Adrian Research Centre for the Study of Learning Processes in the Mentally Handicapped University of Manchester (1968-1992); Professor of Education, Head of School of Education and Dean of the Faculty of Education, University of Manchester (1991-1995).  Currently Hon Research Fellow Division of Nursing, Midwifery and Social Work in the Faculty of Sustainability, Education, Environment and Development, University of Manchester.  

References

Mittler, P (2010) Think Global Act Local: A Personal Journey, Bloomington, Ohio and London, Author House.

Mittler, P. (2013) Overcoming Exclusion: Social Justice through Education, Routledge Library of Educationalists.

Wendy Mitchell (2018 ) Someone I Used to Know, London: Bloomsbury.

Organisation for Economic Cooperation and Development  (2015) Addressing Dementia: The OECD Report.

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Hello, my name is Jerry Wylie

On the final Day of the #DAI #Hello my name is blog series for World Alzheimer’s Month #WAM2018, we feature Jerry Wylie, DAI’s Vice Chair and an advocate from Philomath, Oregon, in the USA. Jerry is a committed and very active board member, and supports two of our peer to peer support groups, as well as co-hosting our Action Group and wekly Brain Health Meetings.

Thank you Jerry, from everyone, for saying hello again here to support this series, and for all that you do for DAI and others. Jerry has also set up a local face to face support group where he lives, which now has more than 20 members. We are very proud of him, and grateful for his hard work. This is his story.

It is a matter of our Civil Rights

DAI & Jerry Wylie © 2018

DAI’s vision: “A World where people with dementia are fully valued and included.”

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Hello, my name is Christine Thelker

Image source: Christine Thelker

On Day 29 of our #DAI #Hello my name is blog series for World Alzheimer’s Month #WAM2018, we feature DAI member and advocate, Christine Thelker from Canada. Christine is an incredibly active advocate and DAI member, and supports one of our CA/USA support group. She was also featured in our online Art Exhibition this week!

Thank you Christine for sharing your story by saying hello here, and for all that you do for DAI and others. We love you too. Special thanks also to Mike Belleville for finalising the production of Christine’s video, and upoading it into our YouTube Channel.

Joining DAI saved my life

DAI & Christine Thelker © 2018

DAI’s vision: “A World where people with dementia are fully valued and included.”

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Hello, my name is Veda Meneghetti

Image source: Accolade 2nd Dementia Summit

It’s almost the end of World Alzheimer’s Month, and we have been sharing our #DAI daily members #Hello is stories. In fact, there are so many in our draft folder, we will be continuing them well beyond #WAM2018. These stories have helped raise awareness not only of dementia, but of the unique and individual experiences each person has with a diagnosis of any type of dementia.

Today, we share  Veda Meneghetti’s story, who was supported by her partner Lynda. DAI member Mike Belleville produced the video which shares some of Veda’s beautiful photographs, with her own music, and an overlay of her story, also copied below. Thank you Veda, and also Lynda and Mike for todays blog.

“Hello, I’m Veda Meneghetti. I was born in Adelaide, Australia to an Italian migrant father and an Australian mother. I got called “Veda Spaghetti” at school.

I hated school, but I was a “cool” teenager.  My mother worked in a department store so I always had great clothes. My dad was a stonemason who worked in marble. He kept a wonderful vegetable & fruit garden and I had animals around me….I love animals.

I liked art but hated everything else and left school at 15. They’d made me feel stupid -I didn’t know I was dyslexic till 50 years later. I taught myself to read & write well, but I can’t read a music score.

I’d been playing guitar & singing since I was 10. I went on TV for a young talent time thing & then became lead vocalist for a couple of Adelaide bands. We started touring in Australia and then went overseas when I was 21. I met up with a girls’ band and continued to work with them as resident musicians in Asia, Africa and Europe. We came back to Australia when I was 27 and became the Party Girls band. We toured a lot, made an album ourselves, appeared on TV and wrote a lot of our own music. In 1985 we were the only girls band to kick off the Australian leg of the 1st. world simulcast, Aids for Africa. I did lead vocals and rhythm guitar.

When the band split up I started my own band, Safari, which played regularly in Sydney in the 90s. I kept on writing songs though I retired from performing. My last 4 songs were recorded in 2010.

In 2012 I was diagnosed with Primary Progressive Aphasia (logopenic). I’m losing language so my partner Lynda is writing this for me. I can’t read or type/write anymore, but I understand.

I joined DAI after I met Kate Swaffer. We did a presentation together in Kiama for Dementia Awareness Month 2014. Lynda and I became members of the Kiama Dementia Friendly Community Advisory Group, the #KiamaDAGs. We get together socially with other people living with dementia in our region, run community education workshops and sometimes do media coverage for the project.  Lynda and I have presented at a few conferences, using my songs and our photos. We’ve made a lot of new friends who have dementia. We still get involved in research. I’m not ashamed to say that I have dementia – people need to know what it’s like.

I just want to live in peace. I’m happy living two hours from Sydney – it’s beautiful here. We go back to the city now & then to visit friends, because now most people have stopped visiting us.”

Veda Meneghetti © 2018

DAI’s vision: “A World where people with dementia are fully valued and included.”

Help us support people such as Veda. Become a DAI Sponsor or Associate today.

Hello, my name is Wally Cox

On Day 27 of our #DAI #Hello my name is blog series for World Alzheimer’s Month #WAM2018, we feature DAI member and advocate, Wally Cox. Wally is an active advocate and DAI member, and co hosts one of our USA support group. Wally also featured in our online Art Exhibition just a few hours ago! Thanks Wally for sharing your story by saying hello here, and for all that you do for DAI and others.

DAI and Wally Cox © 2018

DAI’s vision: “A World where people with dementia are fully valued and included.”

Help us support people such as Wally. Become a DAI Sponsor or Associate today.

Hello, my name is Bob Murray

Image source: Bob Murray

On Day 25 of our #DAI #Hello my name is blog series for World Alzheimer’s Month #WAM2018, we feature DAI member and advocate Bob Murray from Canada.

Bob is also an avid golfer, and a very active member of DAI, attending the weekly DAI peer to peer support groups, our Action Group, our monthly Cafe Le Brain, and the weekly Brain Health meetings. We thank Bob for sharing his story with us here.

Let me help you understand…

Hello, my name is Bob Murray. I have ‘lived well’ with arthritis, cancer, a lousy memory, a hearing impairment, depression and more, and I still live with these health issues, the least of which is ‘ageing’. I now have a dementia and  intend to live well with it wherever the journey takes me. I also want to help you understand.

In 2013, when I was 74, now five years ago, I told my family doctor that I felt that my short-term memory was worsening – ‘senior moments’ were coming more frequently. She did a quick ‘clock’ test and suggested that I get a SPECT brain scan. The result was called ‘mild cognitive impairment’ (MIC – a dementia) which can progress to frontotemporal dementia – a disease of the brain with no known cure. Since then I have read everything that I can find out about MIC and Dementia. Some say the worst of all the dementias is Alzheimer’s Disease (AD). Scary stuff. My wife of one year was probably more scared than me.

I have had a good life and intend to continue the same into my 90’s. Genetics means a lot to me. I take after my father who lived for 52 years with type one diabetes and died at 89 of a stroke. His 3 siblings lived well into their 90’s. My daughter got type one diabetes when she was 7 and is now 46 years old and is doing well. Diabetes skipped my generation. I am the fourth generation of Murrays in the printing industry and my son continues this tradition.

My dementia is progressing slowly

I’ve been Lucky. My dementia is progressing slowly. My ‘senior moments’ are increasing in frequency but, with the help of my caregiver, my wife, I am still ‘living well’ with dementia quite enjoying my life.

There are 2 Doctor’s work with Dementia that I follow closely – Dr. Dale E. Bredesen and Dr. Norman Doidge. If you were to Google these names you will discover a great deal of information re the reversal or delay of cognitive decline and the brain’s way of healing. These are my guidelines for my life in my future. The keys are exercising and nutrition and everything in moderation

I’m now 79 years old, I’ve had a good life, I am LIVING WELL WITH DEMENTIA and intend to continue into my 90’s.

When I was 78 years old my family doctor and the head of our memory clinic and my local Alzheimer’s Society told me that there was nothing they could do for me – I was doing well. We moved away from the big city (Toronto) to a rural small town (Seaforth) in 2015 for it’s peace and quiet. Here I was introduced to the local Alzheimer’s society for counselling for me in Dementia and Care Giving for my wife. Time well spent!

I was introduced to their educational specialist who suggested that I look up the blog of Kate Swaffer who is founder and CEO of Dementia Alliance International (DAI). This organization is restricted to those with dementia. Currently I talk weekly with others over the internet for 2 – 1 hour sessions throughout the world. I was no longer alone. Highly recommended – no cost.

From my time with depression (my early 40’s), I learned that writing about myself was very therapeutic. I met with our local Alzheimer’s Society and we developed a strategy that I would tell my story with dementia and they would publish it in their monthly Alzheimer’s e-newsletter.

Thus was born “My Voyage with Dementia”.

This September’s column was my 11th column and I am also being published in a ‘opinion’ section of a local weekly newspaper. All the columns are on this blog, My Voyage.. This column is now being published on the South Western Ontario website.

Seeing my opinion column in print is very exciting.

Coming up with monthly columns with my personal experiences on dementia has not been as tough a job as I had anticipated. Going weekly may be in my future – it excites me as a great challenge. I meet with the newspaper in 2 weeks to decide on a win-win course of action. Stay tuned. In the meantime please read my past columns – I appreciate comments. This challenge seems to be slowing the progress of my dementia. Time will tell.

Keeping my brain fully engaged is important to me. Incidentally, since starting to learn to play the saxophone my golf game has improved from the mid 90’s to the mid 80’s. If you are a golfer you know that golf is a brain game.

And, life goes on… I do wonder what is next.

Bob Murray © 2018

DAI’s vision: “A World where people with dementia are fully valued and included.”

Help us support people such as Bob. Become a DAI Sponsor or Associate today.

Hello, my name is Davida Sipe

Image source: Davida Sipe

Welcome to another day of World Alzheimer’s Month, where we feature a #DAI member from the US in our #Hello series for #WAM2018. Thanks Davida for sharing your story.

Lewy Body Dementia and Me

Hello my name is Davida Sipe. I first experienced memory loss, confusion, mind fog and hallucinations when I was 50 years old. I spent over a year and many tests with my neurologist to first obtain an early onset Alzheimer diagnosis, which was changed three months later to Lewy Body Dementia by a neuro-physiologist after in depth testing.

My father also had Lewy Body Dementia and when my DNA was tested, it showed that I carry the highest risk dementia gene so mine is most likely due to Alzheimer running on my mother’s side of the family and Lewy Body Dementia from my Dad.

The diagnosis was devastating at first because I had just recently remarried and I was only 51 years old. I was really struggling with day-to-day activities and could not be trusted with financial responsibilities. My last employer strongly encouraged me to quit since I could no longer handle working in customer service and entering orders so I had been unemployed for several months with no prospects of a job that I could actually successfully complete daily. I had truly hit rock bottom when I got my diagnosis.

My neurologist is a wonderful doctor and immediately placed me on medications to treat dementia, which included an anti psychotic to alleviate the very real hallucinations that I was experiencing on a regular basis.

I also started reading about everything that I could learn about Lewy Body Dementia including support groups like Dementia Alliance International and joined their peer-to-peer online chat group.

Exercising, staying socially active & acceptance

Now I exercise daily, watch my diet, stay socially active with my friends and take my medications. I am not able to work and have been approved for disability to help us financially. Despite not working, I stay with a daily routine of activity to keep myself physically, mentally and emotionally active each day. With my medication, currently my mind has cleared a great deal and I only occasionally suffer from hallucinations.

I feel your state of mind and willingness to accept your disease aids in fighting the progression. My father was not so lucky. He refused to accept his diagnosis and would not take his medication to fight the symptoms until he was in the later stage and could no longer refuse them. At that time the medication made very little difference in his mental state. I watched him deteriorate until he was almost unable to swallow and had pneumonia from aspirating his food. A couple months later, he suffered a major stroke and was taken from us…… I honestly felt that his resistance to the medication only made his condition worse so I believed it necessary to accept my diagnosis and to work with my doctors to fight this horrible disease.

Yes, at nearly 53 years old, I have days that the weight of my disease hangs heavily above me but I still fight to stay me. But I have a loving husband, two children and now two grandchildren to fight to stay as clear minded as I possibly can and so far it is working.

I am still me.

Davida Sipe © 2018 

DAI’s vision is “A World where people with dementia are fully valued and included.”

Help us support people such as Davida. Become a DAI Sponsor or Associate today.