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.