Tag Archives: Dementia Awareness Month

A song by James McKillop

James McKillop, Scotland

We are thrilled to highlight this wonderful collaboration during Dementia Awareness Month 2021, a song written by of one of our past board members, and a long time pioneer dementia advocate, James McKillop, with a musician, Gus Harrower.

James has written many songs, poems and stories since being diagnosed, and was delighted that Gus worked to produce it as a song.  #WAM2021

Thank you James and Gus!

This song was featured on the 31st August 2021, as part of the Life Changes Trust online conference ‘Community & Dementia: Creating Better Lives in Greater Glasgow and Clyde’. They started the conference with this song, written bys James McKillop, who lives with a diagnosis of dementia in Glasgow.

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The importance of connections by Chrissy Thelker

For Day 8 of Dementia Awareness Month, we are thrilled to publish a blog about the importance of connections, written by DAI member, Chrissy Thelker.  #WAM2021 #DAM2021 Thank you Christine.

The Importance Of Connections 

By Christine Thelker
This morning much too my delight, I received a video call from a friend who also lives with dementia, she is in Scotland to visit her mother.
Now for a little history; she and I have never met in person, yet we have a connection, a friendship that is the type of friendship that warrants a video call even though she’s on the other side of the world on holidays at the moment.
During our conversation today she told me one of the reasons she had to call was because she wanted to thank me, for reaching out and answering her when she was first diagnosed and looking for support.
It was through that that she became a member of DAI, it was through that that the friendship blossomed. DAI is often the gateway to connecting people. It affords us the opportunity to meet others who share our journey.
DAI gives us that safe place to share to laugh to cry. To rediscover who we are after being devastated by receiving a diagnosis.
The people we meet, the webinars the cafes, the support groups, they all help us learn to live, to really live, despite our illness. You can attend many groups, work with many organizations, and they all offer certain things, we can gain something from many of them. I have watched as many who came to DAI struggling through the devastation of being diagnosed, feeling lost, alone, their confidence and self worth bottomed out.
I have watched those same people flourish and bloom, to go on to do many great things, not only for and as part of DAI, but also to start, or take active roles in other organizations, they have found themselves, reinvented themselves, regained the confidence they had lost and they are doing an incredible things that end up helping others.
And that was what the video call this morning was about, a call to say thank you for reaching out, because while in Scotland it offered her the opportunity to be that for someone else, and so felt compelled to say thank you. I was so moved by that call, we discussed how important those connections we make are, how important and intricate they are to our journey to find our wellness, to our continued well being.
We form connections, we find friendships, even with people we haven’t met.
We so often talk about all the things we can do to help us in our bid to live our best lives with dementia, we talk about, rehabilitation, nutrition, exercise, sleep, being mindful. But I believe the often overlooked piece is connections, connections with others.
I am grateful for the friendships and connections DAI has brought to my life, I continue to reach out to others, and have been so grateful to hear on several occasions in the last few weeks from some thanking me and I always hope that they to can offer that someday to someone. My friend thanked me for the gift I had bestowed on her which allowed her to be that person for someone else, the connections are truly a gift.
Together the impact we have on each other, for each other, is priceless.
So for Dementia Awareness Month, I challenge you all to think about the friendships you’ve made, and reach out and offer it up to others, encourage them to join DAI, so they to can go on and be instrumental in all the good that’s being done out there, through DAI and the many grassroots and local groups, and many organizations that are striving to improve the lives of those of us who are living with dementia.
Christine Thelker 

Since you’re here, please donate to DAI today

By donating to DAI, you will ensure we can continue our work supporting people diagnosed with dementia, our families and friends who support us, and the broader dementia community of researchers and professionals.

World Alzheimers Month DAI Webinar Series

World Alzheimer’s Month 2021 #WAM2021,  also known in some countries as Dementia Awareness Month #DAM or Dementia Action Week #DAW is almost here!

Lets’s all work together to make a difference.
#Collaborate #Cooperate #WorkingTogether

This year DAI has planned a series of webinars specifically focused on rehabilitation for dementia. We have done this, as people with dementia have been campaigning for the full suite of rehabilitative interventions for decades, and at last, we appear to be seeing small actions towards actually achieving this.

Last year, Professor Lee-Fay Low and A/Professor Kate Laver edited a book on Rehabilitaiton for Dementia. This year, the World Health Organisation has been working on their own Rehabilitation for Dementia Guidelines, so there is hope it will eventually make it into mainstream clinical and care practice.

Rehabilitation and Dementia #DAI Webinar Series 2021

  1. Webinar 1: Rehabilitation to maintain physical function, presented by A/Prof Michele Callisaya and Dr Morag Taylor
  2. Webinar 2: Living life to the full: rehabilitation of daily activities and leisure for people with dementia, presented by Associate Professor Kate Laver and Doctor Claire O’Connor
  3. Webinar 3: Cognition-oriented treatments for people with dementia, presented by Dr Alex Bahar-Fuchs and Dr Loren Mowszowski
  4. Webinar 4 Panel Session: The Importance of Rehabilitation for all People with Dementia, with panellists includng Professor Lee-Fay Low, PhD, Emily Ong, Lynette Rogers and Kate Swaffer

Rehabilitation for all people with dementia is a basic human right, and in this series, DAI aims to highlight why.

REMINDER

Reminder to register for the two webinars this coming week too, both very important sessions exploring new ways of managing dementia.

  1. How to make Alzheimer’s a rare Disease!, by Professor Dale Bredesen, M.D.
  2. Updates In Precision Medicine and Protocols for MCI & Dementia, by Dr Nate Bergman DO, MBA

What’s it like to live with dementia?

 

 

On the final day of Dementia Awareness Month, we share a short video of one of our co founders, Kate Swaffer talking about three things she now knows about dementia.

As a co founding member of DAI, Kate has often said she is glad she co-founded DAI, because it provides support, gives people hope, and helps them to ‘reclaim their lives‘, after it has been stripped away.

Whilst not all members join peer to peer support groups, and not all members become active in DAI, those who do, regularly say: “DAI saved their life”. DAI is Life Changing.

3 Things I know [about dementia]

The Drum, SBS, Australia

Introduction by Ellen Fanning, 5 May 2020,
Reporter Stephanie Bolte

When [DAI co-founder, Chair and CEO] Kate Swaffer started to see words upside down over a decade ago, she thought it was a result of brain surgery she’d had. It turned out she was one of more than 26,00 people in Australia under the age of 65 with what’s known as younger onset dementia. 

Told to get ready to die, Kate’s world seemed to disappear overnight, but she realised it didn’t have to, and she has gone on to co-found Dementia Alliance International and advocate across the globe for dementia in practice to be seen as a disability. She sat down with reporter Stephanie Boltje, before the Coronavirus shutdown, to explain three things she knows about dementia.

Since you’re here…

… we’re asking readers like you to support our members, by donating to our organization.

With more than 50 million people living with dementia, and the Coronavirus pandemic causing everyone to operate in a virtual world, our work has never been more important.

Every contribution, however big or small, is so valuable to our work of supporting people diagnosed with any type of dementia to live more positively, and with a greater sense of hope.  Thank you.

Help more people with dementia to continue to have a voice, by donating to DAI.

Using Montessori Principles to Radically Improve Engagement for Residents and Staff

 

 

DAI was honoured to have two very eminent experts present at the May 2020 “Meeting Of The Minds” Webinar. Dr. Camp is the Director of Research, at the Center for Applied Research in Dementia, and a highly published author. Gary Johnson is a Partner and Consultant, at Monarch Pathways. His passion is improving the relationship that happens between frontline staff and their leaders.

It is already day 25 of Dementia Awareness Month #DAM2020 and we are delighted to highlight the recording of this webinar. Thank you Cameron and Gary.

Since you’re here…

… we’re asking readers like you to support our members, by donating to our organizaton.

With more than 50 million people living with dementia, and the Coronavisus pandemic causing everyone to operate in a virtual world,  our work has never been more important.

Every contribution, however big or small, is so valuable to our work of supporting people diagnosed with any type of dementia to live more positively, and with a greater sense of hope.  Thank  you.

Help more people with dementia people with dementia to have a voice, by  supporting DAI.

 

About the webinar: These are challenging times and call for innovative methods. Two nursing homes decided to draw upon and apply the teaching and principles of Dr. Maria Montessori. Montessori believed the most important task of a teacher was not to teach but to observe the students and create an environment that encouraged students to teach themselves and each other what they needed to know when they needed to know it. She achieved amazing results! Similarly, amazing results are achieved when her approach is applied to persons living with Dementia, such as a dramatic reduction in drug use to control unpleasant or aggressive behaviours, reduction in staff & resident injuries, and an increase in level of activity of residents.

How powerful it would be if these same principles were applied at the same time to front line staff and those who supervise them. Effectively, this would create a new architecture for workplace culture, making it possible for employees to be the best versions of themselves as often as possible. We will review two case studies from organizations on their successful journey to breathe Montessori Inspired Principles into their organizations. It’s a Human Thing®

About Dr Camp: Dr. Camp gives workshops on designing cognitive and behavioral interventions for dementia internationally. These interventions are all designed to reduce challenging behaviors and increase the level of functioning and quality of life of persons with dementia. He has co-authored three college textbooks and published over 150 peer-reviewed articles and book chapters.

About Gary W. Johnson: Gary’s passion is improving the relationship that happens between frontline staff and their leaders. He has served as a Vice President of Operations for a large CCRC in central Pennsylvania. Gary is a licensed nursing home administrator. He has served on numerous boards and presented at regional and national conferences. He also served as adjunct faculty for Temple University. He is skilled at creating healthy teams, cultures and operational efficiencies. Gary has the unique ability to see to the heart of things and help people to be the best versions of themselves.

Lyn Rogers shares why she is glad she joined DAI

Lyn Rogers is a member of DAI, and shares with us on Day 24 of Dementia Awareness Month, why she is glad she found DAI. Lyn has been a permanent resident in a nursing home (residential care facility) in the state of Victoria in Australia for over two years.

Lyn has a diagnosis of dementia and lives with other comorbidities, like most people over the age of 65. She moved to the facility from Queensland, therefore most of her family and friends are not living nearby, and although she uses a crutch, she loves to go for a daily walk, which is essential she maintain her mobility and emotional health. It has been much more lonely since the COVID-199 pandemic, as she has faced significant challenges being allowed to maintain her walking and other activities.

Thank you Lyn. We are really glad you found DAI.

https://youtu.be/pCYeS8NERbo

Since you’re here…

… we’re asking readers like you to support our members, by donating to our organizaton.

With more than 50 million people living with dementia, and the Coronavisus pandemic causing everyone to operate in a virtual world,  our work has never been more important.

Every contribution, however big or small, is so valuable to our work of supporting people diagnosed with any type of dementia to live more positively, and with a greater sense of hope.  Thank  you.

Help more people with dementia like Lyn to have a voice, by  supporting DAI.

 

World Alzheimers Report 2020: Design, Dignity, Dementia: Dementia-related design and the built environment

On day 23 of World Alzheimer’s Month/Dementia Awareness Month #DAM2020 we are pleased to share the Alzheimer’s Disease International World Alzheimer Report launched yesterday on World Alzheimer’s Day: Design, Dignity, Dementia: Dementia-related design and the built environment. Our  daily series is varied and we hope, relevant, and this topic is critical to the future of dementia care.

Increased awareness had been desperately needed of the potential of good design to improve equal access for people with dementia, and there has been increasing urgent global demand by people living with dementia to see this translated into practice.

The two volumes of the 2020 World Alzheimers Report have brought together the principles and practice, and will be an important resource now and into the future.

The webinar hosted by ADI was extremely well attended, with more than 1100 who registered, and over 600 people from 77 countries who logged in and attended the live event.

An important theme running through the webinar was around dignity – or the lack of dignity accorded to people living with dementia by certain design methods. Panelist Kevin Charras PhD showed a slide of different examples of this, stating: “It’s quite appalling when design relies on stigma and stereotypes of dementia. It turns into furniture that is vintage, colours and contrasts that are exaggerated, and signage that is triple in size, and streets inside buildings, which becomes very confusing.”

Watch the recording of the webinar here:

World Alzheimer Report 2020_Vol1

World Alzheimer Report 2020_Vol2

Kate Swaffer presented at the webinar, and has provided her slides here and speech notes below.

Disability Rights, Enabling Design and Dementia

Kate Swaffer, ADI Webinar, 21 September 2020

Slide 1 – Disability Rights, Enabling Design and Dementia

Thank you to Paola and ADI for launching such a critical report, and congratulations to the report co leads Richard, John and Kirsty for your a very impressive report.

It is very comprehensive, and I’m sure it will become an influential report into the future. Thanks also to Richard for the opportunity to contribute to it.

Slide 2 – Reframing Dementia as a disAbility

The World Health Organisation (WHO) clearly states that dementia is one of the major causes of disability and dependency among older people worldwide and through campaigning at the 2016 WHO Mental Health Forum in Geneva, cognitive disabilities were added as a fourth category under the mental health umbrella. Now that dementia is being described in UN documents as a cognitive disability, we are reminded that people with dementia are fully recognised by the UN as rights bearers under the CRPD treaty.”

In an article I co-authored with Prof. Richard Fleming, Dr Linda Steele and others, we quoted Susan Cahill, who noted, the CRPD ‘allows for a new and exciting dialogue to emerge, where the framing of dementia is no longer characterized by stigma, fear and exclusion, but rather, where the individual with dementia is viewed as a legitimate part of mainstream society’.

Once we accept that ‘dementia is a major cause of disability’ we understand it is a critical reason why it is so important the built environment for people with dementia is accessible, in the same way we provide wheelchair access.

With the rise of a disability rights movement for disabilities caused by any type of dementia, predominantly being led by people with dementia globally, we have come to understand the problem is not with the person with dementia, but about the environment being made accessible.

This of course, includes the physical and built environments.

Disability arises out of the interaction between a person with a health condition, and the environment in which they live and work.  A health condition causing disability can include a stroke or a diagnosis of dementia, a long-term health condition such as mental illness, or through losing a limb or another physical function due to an accident.

As this slide shows, we have icons that equate to action, including in most countries, legislation, for most of the more visible disAbilities – it is now time for the invisible disabilities such as sensory or communication disabilities, to be included in building design, and in the way organisations operate.

What use is my wheelchair, if there is no ramp or lift to allow me access?

Similarly, what use is it me going to the bank or supermarket, if the staff can’t communicate with me?

Not to provide equitable access, including through the built environment for everyone is like asking someone without legs to climb a flight of stairs.

Slide 3 – Human and Legal Rights

Even though people with dementia still retain the same rights as anyone else in society, including human rights and disability rights, there has been little change in the realisation of these rights.

A human rights-based approach is about making people aware of their rights, whilst increasing the accountability of individuals and institutions who are responsible for respecting, protecting and fulfilling rights.

The WHO Global Dementia Action Plan for a Public Health Response to Dementia identifies human rights (and specifically the CRPD) as one of three ‘cross-cutting principles’.

The principles included in the Convention on the Rights of Persons with Disabilities and its Optional Protocol (CRPD) are clear; it is up to us to provide people with any kind of disabilities with the options to make those choices.

We cannot live with dignity, if we are not provided with access to live with dignity and respect.

We cannot participate equally, if we are not provided with the access to do so.

All of these principles are underpinned by the built environment, and our responsibility to ensure access to it, as we do with other disabilities.

The use of these principles allows a design to respond in different ways to people’s needs, preferences, lifestyles, cultural and socio-economic backgrounds, as well as the local climate and geography.

No longer can we pick and choose what rights we wish to uphold, or only focus on e.g. rights to dignity or health, which when interpreted do not disrupt the current medicalised approach to dementia;

Disability rights and disability access matters to me; in fact I cannot maintain my independence without it.

I hope they also matter to you.

People with physical disabilities have made major progress as substantial, influential members of society.

Yet we are still being left behind, not only in terms of health and social care, but in terms of recognition and the management of dementia as a condition causing disability and therefore of legislated disability support including enabling and accessible built environments and communities.

What this means is that people with cognitive disabilities caused by dementia are still being denied the most basic access to live independently in their communities.

Slide 4 – The built environment and disability

The environment’s influence in creating disability or in increasing it has been well established and is seen as integral to the definition of disability and is integral to the definition of disability. When the built environment changes, then the experience of someone living with a disability will also change.

The paradigm change introduced many decades ago by the disability rights movement has made modifying the built environment for accessibility commonplace, and in most countries, legislated. We are all so familiar with accommodations for physical disabilities that it is rarely an issue, as accessible bathrooms, guide-dogs, assistive listening systems, or wheelchair ramps are available almost everywhere.

As the image of this wheelchair shows us, even wheelchairs are being made much more accessible than when they were first in use. This is how we must view the built environment too, as we need equitable access for all.  We know that most people who have dementia or who are older and require assistance with our daily activities, would prefer to continue to live in their own communities and stay in their homes, and society has a responsibility to ensure equal access as all of its citizens.

Slide 5 – Thank you

We must all work towards ensuring the built environment for people with dementia is accessible.

  • We don’t need more reports or more rhetoric.
  • What we really need now is ACTION.

Thank you.

Kate Swaffer, MSc, BPsych, BA, Retired nurse
Chair, CEO and co-founder, Dementia Alliance International
Board member, Alzheimer’s Disease International

Since you’re here…

… we’re asking readers like you to support our members, by donating to our organizaton.

 

With more than 50 million people living with dementia, and the Coronavisus pandemic causing everyone to operate in a virtual world,  our work has never been more important.

Every contribution, however big or small, is so valuable to our work of supporting people diagnosed with any type of dementia to live more positively, and with a greater sense of hope.  Thank  you.

Help more people with dementia to have a voice, by  supporting DAI.

Diana Blackwelder shares why she is glad she found DAI

On day 22 of Dementia Awareness Month #DAM2020 we are pleased to hear from Diana Blackwelder on why she is glad she found DAI. Diana is a Board member, on our Action group, and has been a back up host for our Friday peer to peer support groups. She is involved with advocacy through DAI, and her local chapter, as well as through being involved in dementia research. Diana has also been very involved in supporting this campaign, by interviewing other DAI members as they share their stories this month.

Thank you Diana. We are really glad you found DAI.

Since you’re here…

… we’re asking readers like you to support our members, by donating to our organizaton.

With more than 50 million people living with dementia, and the Coronavisus pandemic causing everyone to operate in a virtual world,  our work has never been more important.

Every contribution, however big or small, is so valuable to our work of supporting people diagnosed with any type of dementia to live more positively, and with a greater sense of hope.  Thank  you.

Help more people like Diana today, by  supporting DAI

Natalie Ive: why she is glad she found DAI

As Dementia Alliance International (DAI) celebrates Dementia Awareness Month in 2020, we continue to bring you stories from our members.

It is already Day 9, and in todays podcast, Natalie Ive from Melbourne, in Victoria Australia tells us what it was like being diagnosed with younger onset dementia at the age of 47, and what she likes about the support and networks she has found through DAI.

Thank you Natalie. We are so glad you found DAI.

Since you’re here…

… we’re asking readers like you to support our members, by donating to our organizaton. With more than 50 million people living with dementia, and the Coronavisus pandemic causing everyone to operate in a virtual world,  our work has never been more important. Every contribution, however big or small, is so valuable to o ur work of supportign people diagnosed with dementia to live more positively, and with a greater sense of hope.

Please join the Monday Science Podcast fundraiser to support more people with dementia like Natalie.

Or you can make a donation directly to DAI.

Journey into ‘ALZHEIMERLAND’ by Peter Mittler

Screen Shot 2015-09-22 at 8.21.47 amAs part of our celebrations for World Alzheimer’s Month 2015, or Dementia Awareness Month as we have been calling it, we are proud to publish an excerpt from a chapter in a book, written by one of our members in the UK, Professor Peter Mittler.

Peter Mittler is Emeritus Professor of Special Needs Education at the University of Manchester. He trained as a clinical psychologist, and devoted his career to championing the rights of people with intellectual and developmental disabilities to education and citizenship. He is a former President of Inclusion International, a UN consultant on disability and education and is active in promoting the UN Convention on the Rights of Persons with Disabilities.

He was diagnosed with ‘early, very mild Alzheimer’s’ in 2006, and the article which follows is an updated and revised version of an invited editorial which first appeared under the same title in the journal Dementia [i].

 

JOURNEY INTO ALZHEIMERLAND

In Whitman, L. (ed) People with Dementia Speak Out. London: Jessicca Kinglsey Publishers. 2015

Then

I would probably not have asked for a referral to the local memory clinic if I had not had previous experience of assessing people for dementia in my first job as an NHS clinical psychologist. I remember my discomfort at that time in realising that test findings did not necessarily reflect what people could or could not do in real life situations. That lesson is now part of my own story.

I went to the clinic because my wife and I were concerned about an increasing number of memory lapses, such as not bringing home the right shopping and forgetting to do routine things like switching off lights and closing cupboard doors. I knew that early diagnosis was important and that drugs were now available which could at least slow down the deterioration associated with the disease.

The experience of being on the ‘other side of the table’ at the age of 76 was a bit strange at first, especially when I realised that I had used some of the same memory tests 50 years earlier. My psychological test results showed average or above average functioning in most areas, with the significant exception of tasks involving immediate recall of strings of unrelated words or pictures. I half expected this finding, because when my children were small they could always beat me at games requiring the recall of large numbers of upturned pictures, but a series of brain scans also revealed a greater degree of cortical atrophy (‘holes in the head’) than might be expected at my age. After reviewing all the evidence, including a detailed account of the concerns expressed by my wife, the consultant told us that although Alzheimer’s could only be fully confirmed at autopsy, the balance of probability lay with a diagnosis of “early, very mild Alzheimer’s Disease”. I trusted his experience, politely declined his offer of a second opinion and arranged to donate what was left of my brain to the Brain Bank research programme.

When I first told people about my diagnosis, most were incredulous, dismissing examples of my memory lapses as mere ‘senior moments’ and capping them with more serious examples from their own experience. However, the fact that I do not display ‘obvious’ symptoms of dementia does not mean that the diagnosis is wrong – that I am a ‘false positive’, in the medical jargon.

Now

The good news is that eight years later, the rapid deterioration which I was expecting has not materialised. My psychological test results have not changed over many re-assessments: in fact, the most recent reflects a slight improvement on the first. Even the tests of immediate recall on which I feel I do very badly are now just within the average range for my age.

My day to day functioning in most areas seems to me to be about normal for my age and background. I still sometimes forget to shut drawers or put things back where they belong but claim to get it right more often than not. I can look after myself if necessary and undertake complex journeys.   I feel reasonably competent in driving in familiar areas but am now more watchful and slower at decision making and worried about the annual renewal of my licence.

In many ways, my intellectual and cultural horizons have expanded since I retired from full-time university work 20 years ago. My reading has been enriched to include twentieth century history and politics, as well as travel books and modern literature and I now have a fuller appreciation of music and the visual arts, especially since acquiring a second home in Florence. I have published a memoir[ii], edited a selection of my papers for publication[iii] and contributed several new papers to academic and professional journals on the implementation of the new United Nations Convention on the Rights of Persons with Disabilities which could greatly improve the quality of life and support for all disabled people, including those living with dementia[iv]. Nevertheless, I have decided to stop academic writing because I now find it more difficult and because it takes up too much time which can be better spent in more rewarding activities.

An A* in GCSE Italian in 2008 provided welcome independent evidence that I could still learn, while the high marks that I later received for an Open University degree level module in Italian did more for my self-esteem than my doctorate several decades earlier. Despite my good examination marks and competence in reading and speaking Italian, my ability to understand and follow a conversation is disproportionately low, even under ideal acoustic conditions when I am wearing headphones to listen to a studio-recorded disc. This could be due to Alzheimer’s, old age, or some complex combination of the two. Be that as it may, it is frustrating for me and confusing for Italians who assume that because I can speak the language, they can talk at their normal speed – and all at once.

It is difficult to draw a clear line between the effects of ‘normal ageing’ and Alzheimer’s disease for people at my end of the dementia spectrum. The difficulty is overshadowed in my case by severe deafness which now deprives me of some 70 per cent of normal hearing. My particular combination of dementia and deafness is more than doubly debilitating because it affects the quality of my life and relationships. Although digital hearing aids can amplify sound, they are not yet able to strike a balance between essential foreground information and background noise in social situations and restaurants.   Irrelevant and intrusive music makes it particularly difficult for me to follow a story line on radio or television, though I can still do so in reading.   It is also difficult for me to use the telephone because although I may be able to hear the speaker, it takes me much longer to understand what is being said. Worst of all, even one-to one conversations in quiet conditions can become frustrating because I have misheard or misunderstood what has been said when I thought I had been listening hard to avoid communication breakdowns. These ‘processing difficulties’ are associated with dementia but there is very little knowledge or understanding about their impact on people who also have a significant hearing loss.

Nevertheless, there are times when dementia does seem to be the most likely explanation of behaviours which are completely out of character. One notable example occurred in Italy several years ago when I forgot to move our car from the town square before market day, only to come across it the next morning surrounded by fruit and vegetable stalls and with a policeman bearing down on me, notebook in hand. I had always remembered to move the car in good time, so this lapse was quite uncharacteristic. Furthermore, I had already spent some time in another part of the market that morning without anything triggering a reminder that I should have moved the car on the previous evening.

These episodes are mercifully rare, and I do what I can to prevent them by making a list of day to day tasks. But there are times when a new mistake makes me wonder whether the deterioration slope is about to become steeper, even precipitous, as happened with a friend of ours. Examples include the misreading of a timetable which caused us to arrive at a railway station an hour too early and another day when I made five small mistakes, each of which could be mistaken for ‘professorial absent-mindedness’ but which, taken together, might be the first sign of a more rapid decline.

Next?

Like autism, dementia is on a spectrum. I am fortunate to be at one end of that spectrum but how long can this continue? Annual health checks show that apart from hearing, all my other systems are functioning well for my age but how long will my addled brain be able to keep pace as I go through the second half of my 80s or 90s? When I put this question to my consultant after four years, I was encouraged by his statement that there was no reason why the next four years should be any different. I was sceptical about this prediction but relieved that it seems to have been confirmed.

Although I am now more interested in prognosis than diagnosis, I later asked him if he had considered the alternative classification of ‘mild cognitive impairment’ which was by that time beginning to be more widely used. I also asked him to imagine a scenario in which he is acting as an expert witness on my behalf in a court of law where I am on a serious criminal charge. What evidence would he use to support his diagnosis of Alzheimer’s disease against another expert witness who insisted that I was within normal limits for my age and therefore fully responsible for my actions? After reviewing my tests and brain scans, he stood by his diagnosis, adding that I had “plenty of reserves in my spare tank” and that the medication which I have been taking deserves some credit for the absence of deterioration.

What about the next four years? Time will tell.

References:

[i] Mittler, P. (2011) Editorial – Journey into Alzheimerland. Dementia: the international journal of social research and practice, 10, 2: 145-147 reproduced by kind permission of the editor and Sage Publications.

[ii] Mittler, P. (2010). Thinking Globally Acting Locally: A Personal Journey. Authorhouse and Amazon. www.mittlermemoir.com

[iii] Mittler, P. (2013) Overcoming Exclusion: Social justice through Education. London: Routledge World Library of Educationalists.

[iv] Mittler, P. (2015) The UN Convention on the Rights of Persons with Disabilities: Implementing a Paradigm Shift. In Iriarte, E., McConkey, R. & Gilligan, R. (eds.) Disability in a Global Age: A Human Rights Based Approach. London: Palgrave MacMillan (in press, available from author).