Tag Archives: Dementia Alliance International

Research roundup on memory and dementia

Slide7For our last blog post in January 2016, we are indeed lucky Dr Shibley Rahman has once again found time in his incredible schedule as an academic and author to write this research wrap for us.

Thank you Shibley, as without volunteers like yourself, and others, it would be difficult indeed to offer the kinds of services and information we are able to offer to our members, all people with dementia, and which are all provided at no charge to them.

Shibley writes:

In this ‘research roundup’ for Dementia Alliance International, I’d like to describe some of the latest developments in memory research.

I will explain how they relate to some classic historic research.

And also I explain why this is relevant to our current understanding of dementia.

Memory impairment is a prominent defining feature of Alzheimer’s disease, yet the degree to which the profile of memory impairment is uniform across patients is not fully resolved. Alzheimer’s disease is the most common form of dementia worldwide.

Recall or retrieval of memory refers to the subsequent re-accessing of events or information from the past, which have been previously encoded and stored in the brain.

Recognition is the association of an event or physical object with one previously experienced or encountered, and involves a process of comparison of information with memory, e.g. recognising a known face, true/false or multiple choice questions, etc.

That there’s a difference has been interesting to cognitive neurologists for ages.

And crucial when it comes to developing new tests in the clinic to develop and distinguish some types of dementia.

Intriguingly, some researchers – Craik and colleagues – recently described a person “VL” (published 2014).

VL was a female who exhibited frequent episodes of erroneous recollections triggered by everyday events.

Based on neuropsychological testing, VL was classified as living with dementia, and indeed was given a diagnosis of probable Alzheimer׳s disease.

Her memory functions were uniformly impaired but her verbal abilities were generally well preserved. A structural MRI brain scan showed extensive areas of gray matter atrophy particularly in frontal and medial-temporal (MTL) areas of the brain.

Results of experimental recognition tests showed that VL had very high false alarm rates on tests using visual pictures, faces and auditory stimuli, but lower false alarm rates on verbal tests.

This is interesting from the point of view that visual and verbal memory might be organised differently in the human brain.

On a different note, it has been unclear to what extent memory is affected in another type of dementia known as frontotemporal lobar degeneration.

Since persons living with this dementia usually have atrophy in regions implicated in memory function, the frontal and/or temporal lobes of the brain, one would expect some memory impairment (see for example and colleagues, 2008).

And this prediction has been generally borne out in clinical observations.

There’s a part of the brain which historically has been associated with aspects of memory – the hippocampus.

This is really classic work.

Scoville and Milner (1957) described the seminal case of H.M. who fell off his bicycle when he was 7 years old, injuring his head. H.M. began to have epileptic seizures when he was 10. By the age of 27 the epileptic attacks prevented him from living a normal life.

Scoville performed an experimental surgery on H.M.’s brain to stop the seizures.  Specifically he removed parts of HM’s temporal lobes (part of his hippocampus along with it). The seizures stopped but H.M. had amnesia for the rest of his life.

This case study of H.M. provides information on how particular brain areas and networks are involved in memory processing. This helped scientists to formulate new theories about memory functioning.

H.M. could no longer store new memories (anterograde amnesia). Most of his memories from before the operation remained intact (partial retrograde amnesia).

It’s from work like this that people have been drawn to believe that the hippocampus play a critical role in converting memories of experiences from short term memory to long term memory (“the permanent store”).

H.M. was able to retain some memories for events that happened long before his surgery. This indicates that the medial temporal region with the hippocampus is not the site of permanent storage in itself. It rather seems to play a role in how memories are organised and then stored elsewhere in the brain.

All of this is fascinating in relation to the very commonly held observation about the decline of memory in people living with Alzheimer’s disease: that memory for new events declines comes before the decline in old memories.

This is introduced, indeed, in the ‘bookcase analogy’ of the “Dementia Friends” information sessions which originated in England.

Bringing this all right up to date, Patai and colleagues have recently investigated further the role of the hippocampus part of the brain (2015).

The availability of a large cohort of patients who had sustained relatively selective hippocampal damage early in life enabled us to determine which type of mnemonic deficit showed a correlation with extent of hippocampal injury.

They assessed their patient cohort on a test that provides measures of recognition and recall that are equated for difficulty and found that the patients’ performance on the recall tests correlated significantly with their hippocampal volumes.

However, they also found that their performance on the equally difficult recognition tests did not and, indeed, was largely unaffected regardless of extent of hippocampal loss of volume.

The results provide new evidence in favour of the view that the hippocampus is essential for recall but not for recognition.

So, the story continues. This excellent research benefits our understanding of dementia, and how we can develop new ways of identifying and people living with memory problems “living beyond dementia” (Swaffer, 2015).


Craik FI, Barense MD, Rathbone CJ, Grusec JE, Stuss DT, Gao F, Scott CJ5 Black SE. VL: a further case of erroneous recollection. Neuropsychologia. 2014 Apr;56:367-80. doi: 10.1016/j.neuropsychologia.2014.02.007. Epub 2014 Feb 20.

Patai EZ, Gadian DG, Cooper JM, Dzieciol AM, Mishkin M, Vargha-Khadem F. Extent of hippocampal atrophy predicts degree of deficit in recall. Proc Natl Acad Sci U S A. 2015 Oct 13;112(41):12830-3. doi: 10.1073/pnas.1511904112. Epub 2015 Sep 28.

Scoville WB, Milner, B. Loss of recent memory after bilateral hippocampal lesions. J Neurol Neurosurg Psychiatry. 1957 Feb;20(1):11-21.

Söderlund H, Black SE, Miller BL, Freedman M, Levine B. Episodic memory and regional atrophy in frontotemporal lobar degeneration. Neuropsychologia. 2008 Jan 15;46(1):127-36. Epub 2007 Aug 9.

Swaffer, K. Living beyond dementia website https://livingbeyonddementia.wordpress.com (accessed 27 January 2016).

Wishing you all a happy and safe festive season


Screen Shot 2015-12-22 at 12.40.24 pm

The Board of Dementia Alliance International wishes our members and supporters a happy and safe festive season, and we very much look forward to seeing you online or in person somewhere in 2016.

It is the festive season for many, and we take this opportunity to wish you all a wonderful time with your families and friends, and hope you stay safe.

It is worth remembering, it is not always a joyous time for everyone, so be kind and gentle on yourselves, and with each other.

Living with dementia: new perspectives

Our blog today also follows the email we sent inviting you to attend the Webinar, A Meeting of The Minds – Living with dementia: new perspectives –  with Dr Al Power in January 2016.

You can register for it here…

Happy 2nd Birthday

Two weeks before the event with Dr Power, we will celebrate our 2nd birthday with an online global celebration, and you will receive an Zoom meeting link early in the New Year.

Keep the date free: Wednesday January 13 / Thursday January 14, 2016 (USA/AU)

It will be a fun and exciting time, and we have much to celebrate. Perhaps the best thing to celebrate is the fact we are growing from strength to strength, with membership, and a louder global voice.

There were (perhaps still are) many doubters that people with dementia could set up and run their own group, including providing FREE membership and FREE services top others with dementia, all done with very little funding. Be proud . We certainly are.

Wear a hat, make a cake, do what ever you feel will make it fun for you.

If you live in the same town or area as other members, get together on the day, and join in as a group. Join forces with other DAI members in person. Have fun, and keep making a difference to not only you down life, but to the lives of others.

Our new Board of Directors

We will introduce our new Board of Directors early in the new year, and look forward to a very exciting year for people with dementia globally as we move towards a world where there really is “Nothing about us, without us.”

Please note:

There will be no Board meeting or Members Open meeting in January 2016, but instead a shared  celebration and an opportunity to meet the new Board members. All formal meetings like this will resume in February.

Best wishes from the 2015 outgoing and 2016 incoming Board members of Dementia Alliance International.

Chair and Editor: Kate Swaffer

R.I.P. Peter Ashley

Screen Shot 2015-11-13 at 7.46.10 amIt is with great sadness that we inform you that a leading global dementia advocate Peter Ashley passed away on Tuesday 10 November 2015.

The members of Dementia Alliance International wish to pass on our condolences and deepest sympathy to Peter’s family and closer friends.

His advocacy has been significant; Peter is also acknowledged by Lisa Genova, in her book Still Alice as he was one of the people with dementia who contributed to her knowledge of the lived experience.

As a leading dementia advocate, and DAI member from the UK, many diagnosed for will have met him personally or online, and worked with him. Many of our members however may not have heard of Peter, and it is with thanks and a debt of gratitude that we remember him, as along with the late Richard Taylor and a few others, Peter was one of the first global advocates for people with dementia.

You can read the tribute to him on the Alzheimer’s Disease International website here. Peter also contributed to our weekly blog, which you can read here.

Those of us who are continuing to fly the flag as dementia advocates are greatly indebted to Peter, and we hope his family find some small sense of strength in the legacy he has left those of us also diagnosed with a dementia. R.I.P dear Peter.

An opportunity to present at ADI Budapest 2016

Screen Shot 2015-11-03 at 9.16.52 amThe time is almost upon us that Abstracts for ADI Budapest 2016 are due, if you are wanting to be considered to present at the Alzheimer’s Disease International conference next year in Budapest. We will have a modest amount of funds to support some DAI members, but not all.

We posted a blog Presenting at Conferences: A few guidelines, which I’d recommend you go to and read if you are considering submitting an abstract.

Dementia Alliance International will be launching its very first formal publication on what being  Dementia Friendly means to people with dementia at t his conference, the first of many to follow. Our members will be given an opportunity to review it once we have a draft, before it is finalised and published.

Important dates for submitting to ADI Budapest 2017:

Abstract submission opened: 28 September 2015
Abstract submission closes: 16 November 2015
Notification to submitters: January 2016

If anyone needs support with this, please contact us at [email protected]


DAI “A Meeting Of The Minds”, with Professor Steven Sabat

This week, we have been privileged to have Professor Steven Sabat deliver a presentation to our members and supporters, and we thank him for his commitment to people with dementia and our families, and to our work at Dementia Alliance International. If you missed it, you can now watch the recording here.

Understanding the selfhood of people with a dementia: context is key

By Professor Steven Sabat, presented to DAI members and supporters on October 28/29, 2015.

A PDF of his power point slides can be downloaded here: Steven Sabat: Understanding the selfhood of people with dementia – Context is the key

Media Release: Alzheimer’s Disease International

Screen Shot 2015-10-04 at 9.37.31 amDementia Alliance International is pleased to report that on Friday Alzheimer’s Disease International achieved a major victory, as the Pan American Health Organization (PAHO), the World Health Organization’s (WHO) region for the Americas, voted unanimously to adopt a landmark Regional Plan of Action on Dementia.

Media Release

Dementia in the americas set to increase from 9.4 million to almost 30 million people by 2050

In response, the Pan American Health Organization (PAHO) adopts landmark Regional Plan of Action on Dementia

London, 2 October 2015: The Pan American Health Organization (PAHO), the World Health Organization’s (WHO) agency for the Americas, has become the first region to adopt a Regional Plan of Action on Dementia.

The World Alzheimer Report 2015, launched by Alzheimer’s Disease International (ADI) at the end of August, revealed that there are over 9.4 million people living with dementia in the Americas region, expected to treble to 29.9 million by 2050. Central America is also expected to experience the highest increase in dementia costs between now and the middle of the century, a rise of 348%. The regional cost of dementia in the Americas is estimated at US $315 billion, comparable to the market value of Google (US $368 billion)*.

During the 67th Session of the Regional Committee of the WHO for the Americas, held earlier this week in Washington D.C., PAHO country representatives voted unanimously in favour of the Plan of Action.

The PAHO Regional Plan of Action on Dementia obliges countries to develop national dementia plans, including the promotion of risk reduction strategies through public health programmes, ensuring a rights-based approach to the provision of care and support for people living with dementia and better training for health professionals, as well as more funding for research.

National dementia plans remain the single most powerful tool to transform national dementia care and support and prepare for the global dementia epidemic. Within the Americas, national dementia plans are currently in place in Costa Rica, Mexico, Argentina and the USA, with Chile expected to announce their plan soon.

Much of the global increase in the prevalence of dementia will take place in the low and middle income countries. Today, more than half of all people with dementia live in low and middle income countries, and this will rise to 68% by 2050. In these countries, stigma, lack of support for people living with dementia and their families and lack of funding for health systems present major challenges.

Johan Vos, Deputy Executive Director of ADI commented: “As the number of people living with dementia worldwide increases, so too will the costs associated with providing care and support. Most governments are woefully unprepared for the seismic increase in dementia’s global impact. ADI is encouraged to see that PAHO has taken leadership on this issue, and hopes that other WHO regions will follow suit in taking action to help support people living with dementia and their families around the world.”

Carissa F. Etienne, Director of PAHO, added: “This plan is the first of its kind for any WHO region, and it could not have come at a better time. In Latin America and the Caribbean, the number of people over 60 is expected to double over the next two decades, and dementia is one of the greatest threats to their independence. We need to take action now to reduce the stigma surrounding this condition, to delay functional decline in people with dementias, and to improve their long-term care, including by supporting their caregivers.”

The adoption of this PAHO plan supports the ‘Call for Action’ agreed in March by 80 countries at the WHO Ministerial Conference on Global Action Against Dementia and for the WHO to put this on their agenda at the January 2016 Executive Board meeting.

*source: Forbes 2015 ranking

Source: Alzheimer’s Disease International
Editor: Kate Swaffer

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].



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


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.


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.


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.


[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).


Today is World Alzheimer’s Day #WAM2015 Day 21

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

Today is World Alzheimer’s Day.

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

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

Read ADI’s statement in full.

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

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

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

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

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

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

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

No evidence you can ‘catch’ Alzheimer’s disease #DAM2015 Day 13

Many in the media continue to write and therefore spread harmful and hurtful misrepresentations about dementia, stories about the causes, the very inaccurate ‘soon to be here’ cures, and most of the time, usually using offensive language.

For Day 13 of Dementia Awareness Month 2015, we thought we should talk about one such article, from last week. There has been a lot of confusion about a number of articles from last week, claiming you can catch Alzheimer’s Disease, so with their permission, I have added the easily understandable response from Alzheimer’s Scotland to this sensationalist and irresponsible journalism.

Screen Shot 2015-09-12 at 6.39.25 amToday’s story on ‘catching’ Alzheimer’s disease

 Published by Alzheimer’s Scotland on Thursday 10 September 2015

“A study was published today (in Nature) which stated that the protein beta-amyloid was found in the brains of eight people who had been who had previously injected with human growth hormone. It was suggested that these people would have therefore gone on to develop Alzheimer’s disease. The protein was observed in seven of the eight brains examined.

Some of today’s headlines have suggested that people can ‘catch’ Alzheimer’s disease, that it is in some way contagious, or that it can be caught through medical or surgical procedures. 

There is no evidence of this. 

Alzheimer Scotland are deeply disappointed by the sensationalist and irresponsible nature of much of today’s coverage.

While this study is interesting, it is far too small to draw any conclusions.

Go to their website to read the full response to this irresponsible journalism.

Editor: Kate Swaffer

Featuring Psychologist, Denise Craig

Denise Crain in Adelaide with DAI member, Ian Gladstone
Denise Craig in Adelaide with DAI member, Ian Gladstone

On the 19th of June this year,   we were privileged to have Denise Craig, a Senior Psychologist and Dementia Advisor,  present at a Café Le Brain in Australia hosted by Dementia Alliance International to discuss her place in the world of dementia care and advocacy. Denise also wanted to receive feedback from the group about post-diagnostic care.

A little background from Denise and a précis of her session…

I came to my dementia advocacy role through my mother’s untimely experience with what would turn out to be a combination of Alzheimer’s Disease and Vascular Dementia. At the time of Mum’s changed behaviours and noticeable memory difficulties I was a mature aged uni student (studying psychology), working part time and raising four children. Mum ‘did everything right’ in that she exercised, had a great diet, enjoyed no more than the occasional social alcoholic drink, she was active, socially well connected, she loved travelling, and she was staunchly Catholic and grateful for life’s many blessings. 

Her illness was unexpected and through us living the nightmare of visiting specialist after specialist (usually to be told we’d need another scan, test, opinion, result, scan, test, opinion, more time etc) I came to the realisation that some things are done well in dementia care and some things are not. I decided then and there that perhaps beyond raising my children, my vocation in life would be in supporting people with dementia to navigate the complexities brought on by illness.

Once qualified I achieved my dream job as Psychologist providing dementia support for people diagnosed with dementia in Cairns. 

Through my role I came to know people living with Young Onset Dementia who often experience a multitude of additional challenges on account of their younger age and life stage. In 2012 (as a private undertaking) I established The Young Onset Dementia Support Group on Facebook as a means of helping to put young people with dementia in contact with each other and also to invite consumers to have their say. I had noticed the difficulty people can have in being heard and I could read the frustration and imagine the angst that would result from the sense of not being believed. It often happens that once a diagnosis of dementia is made, the person has difficulty ‘having a voice’ and may feel as though they are being left out of their own health and lifestyle decision making. This needed addressing.

In an age of Social Media which is readily accessible to many of us, I established the page and although it has disappointing limitations (such as posts by followers to the page are harder to see than posts by administrators) the posts do reach a broad readership very quickly. 

Feedback tells me it has been effective in some arenas and it has certainly helped increase connection of people diagnosed with dementia worldwide. It has also facilitated a host of qualitative responses which have reached peer consumers, care partners and health professionals. Many of the most profoundly powerful messages to the page occur via private messages. Private messages are one way consumers can access the type of support they most want, which is a priority of the page.

Amongst the inspiring advocates I have had the pleasure of getting to know, Kate Swaffer and Christine Bryden have taught me much. I now use all learnings and feedback to tackle aspects of dementia care from within the public service sphere where systemic change can be fostered. My goal of course is to support broad spectrum change in the way we think about dementia and the ways in which we encourage the best possible health and lifestyle for people diagnosed, their care partners and families.

Translating knowledge into practice is essential. After lengthy discussions with Kate and Christine about rehabilitative or ‘enabling’ strategies, it has become clear that knowledge about post-diagnosis options are sadly lacking. 

People diagnosed cannot be expected to see their own way clear of their grief and confusion to advocate for themselves and pursue new strategies that might help. Instead, health professionals could help enormously by facilitating this support during and after diagnosis. 

Enabling support could come from an Occupational Therapist who provides advice about ways to maintain independence, a Psychologist who provides counselling, a Speech Pathologist who supports language difficulties, a Dietician who can advise on dietary recommendations, a Social Worker who can support legal matters and counselling, and so on. 

All too often health professionals are either unaware of the potential benefits of an enablement approach, they don’t know how to reach the help, or the help is simply not available at all.

To be fair, access to available help is extremely complex: it depends on where you live, the funds you have, your age, the expertise of people in your area, whether or not your doctor or another referrer is aware of the availability (which is constantly changing), your mobility and transport and so on. 

Certainly, during our zoom chat the group reported frustrations over the lack of ‘a list’ of service providers and this happens in part because once a list is made it is almost immediately out of date – so it is well recognised that an up to date national information bank is long overdue. A ‘food for thought’ post-diagnosis care pathway document gives a goal to work towards.

To address the knowledge about the benefit of enabling support, I have achieved assistance via the Dementia Training Study Centre National Fellowship Program. Through the Fellowship I am striving to pilot a post-diagnostic care pathway tool. The pathways document is being completed by a multidisciplinary team of health professionals and our consumer member Christine Bryden. During 2015-2016, General Practitioners in Cairns will be approached to use the document to guide the ‘where to from here’ question which consumers ask when they return to their doctor with a dementia diagnosis. 

With excitement it seems that the Kiama Dementia Friendly Communities project is also motivated to pilot the pathways plan and their involvement will increase the feedback from stakeholders and help lead to a better result for people with dementia.

The bottom line for me is that I hope to add my voice and energy to the justification of enabling support after a diagnosis of dementia. 

Not everyone diagnosed will choose to engage with external support but at the moment the lack of awareness of its potential value is a major hurdle. 

For people diagnosed with dementia, my sense is that respect and access to support is overdue and I have to hope that the drive to encourage enablement will lead to an increase in access to needed intervention.

I enjoyed our time together and thank Kate Swaffer and Mick Carmody for inviting me to share my piece of the puzzle and to canvas ideas from the group.

Author: Denise Craig, Senior Psychologist

Note: We loved having Denise share her expertise and experience with our members, and thank her for her time and deep commitment to improving the lives of people with dementia.