Dementia care missing common sense #DAM2015 Day 14

Source: www.condenaststore.com via googleimages.com Source: http://www.condenaststore.com via googleimages.com

It is Day 14, and almost the middle of Dementia Awareness Month 2015, and I decided the topic of Dementia and common sense was a worthwhile one to write about, as I believe generally speaking common sense is missing in our care.

I often think about common sense, and wonder it has gone these days, not just in dementia care, but almost everywhere. Perhaps it’s the farm girl coming out in me, but I think common sense is becoming a lost art, and one we should work on retrieving, especially in dementia care.

The desire and intent to improve and to provide better care for people with dementia seems high in the sector, especially amongst service providers and researchers, and for that, I am truly delighted.

However, whilst we do need evidence based practice, we also need some good old fashioned common sense in our core plans. This definitely…

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RIP Richard Taylor

DAI in Puerto RicoRest In Peace Richard Taylor. Below is a letter I had written to him, also part of a tribute I have previously written to him in my book. A number of people with dementia who he has supported in a weekly support group had endeavoured to put a book of tributes together for him, which we had, of course, wanted to share with him before he died. Of course, we were too late. I have said to Richard many times over the years, quite simply, I love you. The photo was taken at ADI2014 in Puerto Rico where Dementia Alliance International was there for it’s first official and public appearance.

He always began his emails with hello, and this became a regular way for me to start an email to him also, as I am sure many hundreds of people around the world have done. In spite of his death, I am going to share what I wrote to him here…

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Awareness at any cost?

backwardsIn no way do I actually wish to promote this video released recently by the Alzheimer’s Society in Canada as part of their Dementia Friends Canada program, but, I do have to say something about it.

Firstly, it is thrilling they or anyone wishes to work with the Dementia Friends campaign, started in the UK, and made available to all countries by the Alzheimer’s Society UK CEO Jeremy Hughes at the ADI215 conference in Perth.

But really, whoever made and approved that video needs to think about the possible damage they are doing to the rights and advocacy of people with dementia vs the possible value of awareness at any cost.

The video, in my humble opinion, takes us back in our advocacy work 30+ years.

It increases the stigma, exacerbates the myths, and completely stereotypes us by ONLY highlighting our deficits, and not even suggesting we still have many abilities, at…

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Is ‘diagnosed with dementia’ the new ‘in’ group?

Image course: googleimages.com and oslcmonte.com Image source: googleimages.com and oslcmonte.com

The road to a confirmed diagnosis of one or other type of dementia is usually a difficult one, and one that research says can take at least three years for people under the age of 65. In very basic terms, being confirmed with dementia means at least two of the symptoms of dementia get in the way of daily living.

As patients, it seems, the inaccuracies, the misdiagnoses, the lack of a confirmed diagnosis, and the overall management and care comes down to faith! When I looked for an image for the word confirmed, it came up with a religious one! So, perhaps it really is, from our perspective, all about faith.

Dr Shibley Rahman wrote a blog about Mild Cognitive Impairment (MCI) recently, in part as a response to Ken Clasper’s blog Rediagnosis from one dementia to MCI about his diagnosis being changed.  I imagine…

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Inclusion: it’s that simple!

Spot on!

I received this article via an untraceable Avatar on the contact form of my blog, and am sharing it, as I feel it is worthy  of public expression. To enhance the blog, I have added the Dementia Alliance International mantra, which we use as an image. Whoever, you are, thank you for having some light bulb moments!!!

See the person not the dementia

By ‘the listener’

I, along with 1100 other delegates from around the world attended the Alzheimer’s Disease International conference in Perth, Australia. I was really pleased to see the conference being led by delegates who have a connection to dementia, in fact we were told there were approximately 80 people in attendance who had a diagnosis of dementia.

As I was listening to the many keynote speakers, I was most inspired by the powerful presentations by Edie Mayhew (and Anne Tudor, her partner), Helga Rohra and Kate Swaffer – all people who have been…

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Garden of Eden…….

After a 2-day break and feeling thoroughly refreshed I was off again on what was another gloriously hot day to visit the ‘Mary Chester’ Club. The Mary Chester Club provides a place for people living with dementia to go for the day and is open from Monday to Saturday with the latter open specifically to people living with younger onset dementia. It follows the 10 principles of the Eden Alternative- something I will be exploring in more detail when I visit the USA later this year. The Eden Alternative aims to change the culture of elder care and is about enhancing well-being and eliminating the 3 plagues of loneliness, helplessness and boredom what is often the reality for many people living with dementia in care homes today. It values the experience, strengths and wisdom of elders rather than focusing on deficits and decline.

What struck me throughout my visit was the warmth, sense of calm purpose, can-do attitude and spontaneity of the social environment which is led by what people want to do on that specific day either individually or as groups and complemented by occupational profiles completed by the person and their families. Supporting personhood is key to the ethos of the Mary Chester Club and the Eden Alternative as the underlying philosophy.

They have managed to achieve a sensible balance between the clinical/ health & safety aspects of support as a Statutory Service and principles of the Eden Alternative. There is a ratio of 1 member of staff to every 4 people attending and an open door policy for volunteer staff. People are encouraged to undertake activities as they wish which might mean assisting with lunch in the open plan kitchen area or helping in the garden providing the opportunity to give as well as receive care and help reduce any sense of helplessness. I was able to see the positive impact of plants and animals there with a weekly baby/toddler group also taking place, which is positively received-, all 3 help to promote purpose and connectedness to a life worth living

Late afternoon/ early evening I was fortunate enough to kayak once again with what now felt like old friends on the Swan river- such a great way to be truly in the moment.

Up in the early hours of the morning to fly over to Adelaide and find out about an exciting training programme developed by Flinders University and spend some time with the exceedingly busy and inspirational Kate Swaffer.

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Relax (Take It Easy)……….

After an intense (but thoroughly amazing) 4 days at the conference I took 2 days off to recharge the batteries although not particularly taking it that easy- work hard, play harder springs to mind!

My first free day was beautifully hot and sunny, perfect for a 40km bike ride along the spectacular coast to Hillarys, great for clearing out the cobwebs and reflecting on the last few days. The return 20kms though were a little more testing, feeling every little bump along the way and will make sure I pack padded cycle shorts next time!

The evening was spent on a sunset kayak tour on the Swan River opposite the spectacular skyline of Perth city. The smoke from the controlled burns (to help mitigate severity of future bush fires in the Perth hills lazily drifted over the city centre.

The following day was once again hot and sunny, perfect for a free guided tour of the Botanical gardens in Kings Park, Perth that is working towards making all species there native to Australia. Saw a Kookaburra up close and found out many things including there are more than 700 different Eucalyptus species! A more sobering fact though was that Aboriginal people did not get the vote in Australia until 1962.

With Anzac Day fast approaching there was a special service at the State War Memorial and it was humbling to see Graham Edwards there who lost both legs whilst serving in the Vietnam War and has since served as a politician. It is expected that over 40,000 people will attend the Dawn Service at Kings Park on ANZAC Day.

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The evening was spent at a wonderful jazz club listening to the wonderful Toby Beard- would love to see her visit Scotland on her next European tour!

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‘Back On Track’ – Highlights from ADI continued…….

A bit of a glitch with my site but back on track once again…….

Supporting and Enabling People Living with Dementia

Kate Swaffer from Australia spoke about her experience of living well with dementia and that in spite of the losses and changes that she remains here. There was the recognition that whilst we should be striving for Dementia inclusive Communities that we are possibly far too down the line with the term Dementia Friendly Communities but need to go beyond this. Only by working together, keeping the lived experience of people with dementia at the heart of what needs to happen can inclusive communities be developed.

So include people living with dementia in every conversation about them, re-empower them to speak and advocate for themselves. The Scottish Dementia Working Group were highlighted as a great example of where people living with dementia take the lead voice in raising awareness- ‘our journey, our voice.’

Helga Rohra spoke again today and how she does not want to be seen as a victim of dementia but as a victor of dementia. Inclusion is a basic human right and that enablers are needed to help people to live well with dement

Well-being

Dr Al Power, who I met with at the start of my travels, gave a keynote speech on enhancing well being for people living with dementia with 4 aspirations to help bridge the gap between the philosophy and reality.

1# Focus on wellness, not simply illness

By focusing on the deficits and stages of dementia we can over medicalise dementia with the risk of losing sight of the person behind the diagnosis. When people with dementia feel angry, sad or scared it is often considered to be a behavioural, psychological symptom of dementia (BPSD) and they are not afforded the same opportunity as those without dementia to experience these normal emotions without being labelled.

2# Strive to avoid using stigma and fear to advance our cause

Dementia is not an enemy combatant and we cannot demonise dementia without demonising the person. So the use of language is key as it can affect the beliefs, actions and of others around us acting as a barrier to critical thinking. Earlier on Kate had highlighted the language guidelinesSee the Person, Not the Dementia’ developed by Alzheimer’s Australia.

3# Significant operational shifts to foster well-being in all environments

A culture change is needed to ensure relationships are valued over tasks although if systems still focus on tasks then this is not going to work. Dedicated staffing is also very important.

4# Shift from friendly to being inclusive

Whilst the intensions of being dementia friendly are good it can come across as patronising so care needs to be taken with this approach and what might work better is to develop authentic partnerships that support full social citizenship.

Policy, Practice and Economics

The presentation delivered by Chris Lynch from Alzheimer Scotland was positively received as well as my own (thanks Shibley  for the photo) which described some of the work taking place on both a national and local basis to improve the experience for people living with dementia admitted into a general hospital setting. It was really heartening to hear that Scotland is seen by many other countries as taking positive steps to support people to live well with dementia.

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Great links made with colleagues undertaking similar work around the globe including Professor Mark Yates from Victoria, Australia. Look forward to working together in the future.

The Gala dinner took place on the evening and was a great way to celebrate the 30th birthday of Alzheimer Disease International. A wonderful evening of celebrating good work around the world, music, fun and conversations with like-minded people. To top it all each female was given a beautifully wrapped gift, which turned out to be a bottle of perfume!

Final Day

The last day of the conference was tinged with sadness as I reflected on the great people I’d met or heard speak. So much learning to take home with me but also relationships developed for future collaborative working.

I attended the Dementia and Acute Care session which kicked off with Michael Splaine (Policy Advisor for Alzheimer Disease International) who spoke about the all too familiar challenges faced by people living with dementia admitted into hospital and the need for ‘thoughtful hospitalisation- is this admission really necessary’?

Acute hospitals are very much in the brain care business but they just don’t know it and with the increasing numbers of people with dementia and cognitive impairment, you cannot just unit your way out through the provision of ‘acute care of the elderly’- it’s about supporting dementia to be everybody’s business.

Birgit Dietz an architect from Germany delivered an excellent workshop on sensual architecture for people with cognitive risks providing an excellent rationale for recommended changes.

The session concluded with Professor (and General Practitioner) Dimity Pond presenting results from a study of the discharge process and transitional care for people living with dementia and their carers. She identified the many barriers to effective discharge planning with the recognition that people with dementia are often excluded from rehabilitation support (something also flagged up by Kate Swaffer). Demand for post-discharge services also often exceeds availability of services.

This is the first time I have had the opportunity to attend an international Dementia conference and hopefully will not be my last. So many opportunities to learn about different approaches and the practical application as to how to take these forward. It was also reassuring to know though that in Scotland although there is still a way to go, we are on the right tracks.

If we remember the reasons why and for whom we are on this journey and take every opportunity to support the inclusion of people living with dementia and carers in communities including the planning and delivery of healthcare services we will get there.

‘I am no longer accepting the things I cannot change

I am changing the things I cannot accept’