There has been in recent years a developing cross-party consensus on the ‘personalisation agenda’ in health and care, despite a growing army of serious critics. Individualism however co-exists in policy with ‘collective spirit’, the latter for example most notably in the policy plank known as “dementia friendly communities”.
People helping each other is a good thing. And this is, of course, motherhood and apple pie stuff.
For example, Vissier and colleagues (2008) found, in their investigation, that only staff members who received peer support reported greater skills and knowledge, consistent with previous research findings demonstrating that effective peer support for practitioners can be very useful (Edberg and Hallberg, 2001).
It has also been argued that it can be helpful to prepare for “possible personal and emotional responses in conducting clinical research in dementia”, for instance by ensuring that peer support or supervision are available (Ablitt, Jones and Muers, 2009).
The opening paragraph of a paper looking at ‘support groups’ states openly that it did not wish to look at the issue of the composition of support groups in their study (Snyder, Jenkins and Joosten, 2007):
This survey did not attempt to determine who is appropriate for a support group or who may or may not benefit. Indeed, the study sample is biased by the sole inclusion of those who volunteer to attend a sup- port group and continue participation in the group because of some presumed positive experience. This survey does, however, provide insight into why participants continue to attend their group and what aspects of the experience are most valuable.
It is totally unsurprising that the group that has been researched the most comprehensively in peer-peer support comprises caregivers (e.g. Greenwood et al., 2013), although there has been excellent research recently published on volunteering mentoring schemes (Smith and Greenwood, 2014).
We have all seen the hyperbolic claims of wishing to improve global research.
For example, Alzheimer’s Research UK earlier this year made the following point.
The G8 Dementia Summit in December 2013 was effective at galvanising the international community and promising clear and decisive action to tackle dementia. The Summit saw international leaders launch the ‘Global Action Against Dementia’ initiative with the stated the aim of finding a disease modifying treatment or cure by 2025.
And, yes, a lot of money does get pumped into activity which is cellular-related.
But men are not simply collections cells in Petri dishes.
I was immediately attracted the other day to a Facebook group called the “Young Onset Dementia Group”. It’s here.
The Dementia Alliance International (DAI) is a non-profit group of people with dementia that seeks to represent, support, and educate others living with the disease. DAI provides an international and unified voice of strength, advocacy and support in the fight for individual autonomy and improved quality of life for people with dementia.
The DAI gave a talk at the Alzheimer’s Disease International conference held in Puerto Rico this year May 1-4 2014. Their slides are helpfully uploaded here.
Online support groups have become a formidable force. Such “self-help groups” moderated by people with dementia and others; there are no caregivers. They can be an alternative to local support groups that don’t meet their needs, or in absence of a local group. Increasingly, people with dementia turning to social media to connect with one another.
Here is one experience from this group:
With just a couple of days to go, it gives, for example, details of a survey by the National Health and Medical Research Council. They looking for input from people diagnosed with dementia as well as care providers, medical practitioners, family and friends. If you have a few minutes spare and you’re Australian, please complete their survey because telling them what matters to you is so important.
Kate Swaffer (@KateSwaffer) has written about it here. Kate, of course, will be known to very many of you as a champion of change in Australia – and around the world, living well with dementia as a ‘consumer champion, the first ever consultant living with dementia appointed by the influential charity Alzheimer’s Australia.
Kate is well known for her campaigning for issues which people living with dementia wish to lead on. She is heavily AGAINST tokenistic involvement, as her powerful article on stigma and dementia-friendly communities in the prestigious Dementia Journal recently illustrates.
Every month the DAI meet for “Café Le Brain” – an online Memory Cafe that uses video conferencing technology to bring people together from far away. Together, they enjoy conversation, new ideas, support, and some fun. People living with and without the symptoms of dementia are welcome to attend.
The date of the next meeting is Wednesday, November 19, 2014, with a start time: 1 p.m. in Adelaide, Australia; 12:30 p.m. in Brisbane; 10:30 a.m. in Perth; 1:30 p.m. in Sydney; 11:30 a.m. in Tokyo.
If you’re eligible to join, please go to their EventBrite page here.
The Café runs for approximately 90 minutes. To find out the start time in your city, click here. The hosts of that Café will be, on this occasion, Kate Swaffer, Secretary of Dementia Alliance International, Mick Carmody and Gayle Harris, Dementia Alliance International members.
In all honesty, however, it has struck me how there are peer-support groups, fairly well researched (but not extensively researched), where the peers are Doctors or caregivers; but there is virtually no published research on people living with dementia peer mentoring other people living with dementia. This is of course a complete travesty.
For a start, large corporate-like charities in dementia are pump priming lots of money every day into glossy reports on loneliness. And yet the money that goes into high quality in living well with dementia sees this discipline as a very impoverished relation while the never-ending searching for cures that don’t work continue.
But peer support for people living well with dementia is important.
Such networks have worked particularly well for people living with young onset dementia. A number of well known groups are helpfully listed on a “Young Onset Dementia UK” website page.
“Truthful Kindness” (@TruthfulKindnes) is fast becoming a trailblazing leader. Her blog on living with dementia symptoms is widely read. Her “Person with dementia experience” is widely read.
These networks are not new, but operational difficulties in ownership of such groups have long been a problem. Such groups can easily be ‘harvested’ by people not living with dementia. They are ripe pickings, for example, by large corporate-like charities, and indeed Big Pharma. Notwithstanding that, there has been a long and distinguished past for example the “Dementia Advocacy and Support Network International” or DASNI).
Chris Roberts (@mason4233), after a protracted diagnostic experience, was eventually given a diagnosis of mixed dementia. Chris continues to share his observations of that experience of diagnosis itself in public, which has been of huge interest not only to others who’ve found themselves ‘in the same boat’. But this experience should also shame the medical profession into making the process of disclosure of a possible diagnosis of dementia much better than it currently appears to be from many service users of the health service.
And Chris mentions here the improvement in his own wellbeing from participation in “Dementia Friends”, an initiative where Chris gives information sessions on what dementia is to all members of the public; and, also, Chris speaks fondly of his participation in “Dementia Mentors”, a peer support online forum for people living with dementia, as well as his involvement with the Dementia Alliance International, where he is indeed a Board Member.
Both these videos were filmed by me at the recent Alzheimer’s BRACE event, “Hope for the future”, which took place in Bristol earlier last week.
I feel it is likely there is going to be much interest in peer support groups for people living well with dementia, whether corporate-like charities wish to research it or not. It’s going to be essential that the research field doesn’t compartmentalise themselves into silos. For example, a open paper entitled ‘Personalisation vs friendsourcing’ from makes for very interesting reading:
“When information is known only to friends in a social network, traditional crowdsourcing mecha- nisms struggle to motivate a large enough user population and to ensure accuracy of the collected information. We thus introduce friendsourcing, a form of crowdsourcing aimed at collecting accurate information available only to a small, socially-connected group of individuals. Our approach to friendsourcing is to design socially enjoyable interactions that produce the desired information as a side effect.”
Further readings
Ablitt A, Jones GV, Muers J. Living with dementia: a systematic review of the influence of relationship factors. Aging Ment Health. 2009 Jul;13(4):497-511. doi: 10.1080/13607860902774436.
Edberg, A., & Hallberg, I. R. (2001). Actions seen as demanding in patients with severe dementia during one year of intervention: Comparison with controls. International Journal of Nursing Studies, 38, 271–285.
Greenwood N, Habibi R, Mackenzie A, Drennan V, Easton N. Peer support for carers: a qualitative investigation of the experiences of carers and peer volunteers. Am J Alzheimers Dis Other Demen. 2013 Sep;28(6):617-26. doi: 10.1177/1533317513494449. Epub 2013 Jun 30.
Smith R, Greenwood N. The impact of volunteer mentoring schemes on carers of people with dementia and volunteer mentors: a systematic review. Am J Alzheimers Dis Other Demen. 2014 Feb;29(1):8-17. doi: 10.1177/1533317513505135. Epub 2013 Oct 1.
Snyder L, Jenkins C, Joosten L. Effectiveness of support groups for people with mild to moderate Alzheimer’s disease: an evaluative survey. Am J Alzheimers Dis Other Demen. 2007 Feb-Mar;22(1):14-9.
Visser SM, McCabe MP, Hudgson C, Buchanan G, Davison TE, George K. Managing behavioural symptoms of dementia: effectiveness of staff education and peer support. Aging Ment Health. 2008 Jan;12(1):47-55. doi: 10.1080/13607860701366012.
