The value of the DAI peer-to-peer support groups as part of the post-diagnostic pathway for all people diagnosed with dementia
Dementia Alliance International (DAI) is a registered 501c3 charity, that provides advocacy and support for anyone with a diagnosis of any type of dementia, globally.
As part of World Alzheimer’s Month 2022, we are sharing some information about the DAI peer to peer support groups, which were the first in the world for people with dementia (that we know of), and that were also the first to provide support using zoom. In this post, we also include some feedback, and the benefits of attending them.
DAI has been providing and facilitating free online peer-to-peer support groups[i], as well as online cafes and social groups, and educational webinars (through Facebook and Zoom) for its members since before 2014, although the cafes and webinars are currently not active.
These meetings are inclusive of anyone, at any age, with a diagnosis of any type of dementia, and like our membership, are free for people with dementia to attend.
Peer-to-peer support groups have a long history all over the world, including longstanding organisations such as Alcoholics Anonymous, which has been in operation successfully since 1935.
A DAI peer-to-peer support group consists of a small group of people with a diagnosis of any type of dementia, who meet regularly to discuss their experiences, problems, and strategies for coping with the condition, as well as strategies for living more positively with dementia. DAI hosts weekly and monthly online peer-to-peer support groups in multiple time zones, and occasional one-to-one buddying and mentoring.
The late Dr Richard Taylor, a co-founder of DAI who was a retired psychologist, had been hosting one support group via Google Meet, then Zoom, prior to DAI being launched. Another co-founder, Kate Swaffer, is a retired nurse, and had also worked as a grief and loss counsellor and facilitated and hosted in-person peer-to-peer support groups for people bereaved through suicide in Adelaide, Australia, from 1986-1995.
Hence, although the DAI peer-to-peer support groups were not initiated or facilitated by paid professionals, two founders had significant professional experience hosting them.
George Rook, a person living with a diagnosis of dementia in the UK, wrote the following on his blog[ii] about peer-to-peer support groups:
“Peer support occurs when people provide knowledge, experience, emotional, social or practical help to each other… I like that. Note the “or” You don’t have to be a trained expert for peer support to work. Just need to have lived experience and a degree of emotional intelligence and self- awareness.”
Feedback on the DAI peer to peer support groups
Sourced anonymously from people with dementia attending various DAI peer to peer support groups over the years, we continue to receive feedback from new and longer term members which also serves to motivate DAI to keep providing this type of support. Of course, we also receive some negative feedback, for all sorts of reasons, which is normal for any service orivider and all organisations. We always work to find ways to improve our services, when we receive negative feedback.
However, the positives keep us striving to continue to provide them, as DAI members all remember the isolation, stigma, discrimination and loneliness felt facing the diagnosis alone.
“this is the first time I have laughed since my diagnosis two years ago.”
“… and then it took me another 8 years to get a doctor to believe that I had dementia, you know. And them, there was no support afterwards.”
“I couldn’t really hang around somebody like that who is judging or me… that’s what I love about these groups, no one judges me.”
“… way back when I mean that’s all that was after like 12 years of being totally dejected and feeling like I had no purpose in life. This group gave me hope and purpose again. And yet I was totally accepted, and I had not felt that previously I had not found a group. I had not found anything that would propel me to want to continue living.”
“Yeah. That is what this DAI has done for me. Y’all made me want to keep living.”
“Okay. It turned me around completely. I was suicidal. I’m not kidding, I was that bad off, and this group taught me how to live again.”
“How to be, how to be myself more got me more in tune with what myself was really like, cause that at the beginning, but I could feel it thank you it’s how he’d be the future. I had for 12 years. I had absolutely no purpose in life, you know, and I was to the point where I was just ready to take my life, because I just and then somebody turned me on to this group, and all of a sudden, I saw people who were being strong and who could encourage me, that we’re just like me in so many regards.”
In September 2017, Kate Swaffer wrote a blog[iii] which included the following, after attending a DAI peer-to-peer support group:
“Just finished attending our weekly Richard Taylor support group… we’ve been laughing a lot (and almost crying a couple of times) for over 90 minutes. Discussions on grief and loss that we go through, ‘threesomes’ and the Three Stooges, the recent FTD conference and many other interesting things. Congrats to Jerry Wylie for setting up a local support group in his hometown too, we were all truly inspired…”
These are the types of things we have heard repeatedly in the last nine years, and although positive for those individuals, it is very disheartening to keep hearing that a DAI support gorup is the first time people feel hope and joy.
This is because it means the same thing is happening to people being diagnosed with dementia in 2022, that happened to Kate Swaffer in 2014, and which she refers to as Prescribed Disengagement, and that also happened to pioneer dementia advocates like Christine Bryden and James McKillop, in the last century.
Clearly, advocacy is not working well enough… Despite this, we try to remain hopeful that research and other projects will one day, have a truly tangible and positive impact.
Virtual support groups are ideal for those who cannot drive to their local “in person” support group or who live in isolated areas with limited access to services. Since the COVID-19 pandemic, many other organizations have also started to provide them, many basing them on the DAI peer-to-peer support groups, and asking to adapt our guidelines[iv], which were developed by DAI members with the support of professionals.
What we have found is that although face-to-face support may be preferable for most people, as DAI discovered, the provision of virtual access to peer-to-peer support or other services has made it more accessible for those living in regional and remote areas.
Many of our members often also belong to other groups run by different organizations or individuals, either online or in person, if they have them available in their local areas. However, very few are specifically peer to peer, meaning they have people without dementia hosting or co-hosting them. DAI often provides one-to-one, peer-to-peer mentoring and IT assistance to assist new members to feel confident and comfortable online.
Peer-to-peer support should be part of everyone’s post diagnostic support
The value of peer-to-peer support groups as part of our post diagnostic services and support should not be underestimated.
Research shows that hearing from and sharing with others with similar experiences can be very helpful[v]. A peer support program provides a structured environment in which people who share the same long-term illness or condition can safely share their experiences. The importance of meeting with peers facing the same things as you cannot be underestimated whether it is a life experience, a terminal or chronic illness, or a pandemic.
No matter who you are, or what you do, or whether you have an illness, we can all use more people in our lives who “get” it.
Peer-to-peer support has a wide range of both practical and emotional benefits, many of which are listed below, and in our participant and facilitator guidelines. Many people have also asked for permission to adapt them to use in their own organisations.
For example, many people with a chronic illness (especially those recently diagnosed) benefit from receiving practical tips about adjustments they can make to their day-to-day living to better manage their condition; the emotional benefit of realizing that one is not alone cannot be overstated and this often inspires peers to become more independent. More experienced peers may also be empowered by being able to pass on their skills and experience, and in the process, they remind themselves of all they have learned about dealing with their condition.
Benefits of the DAI Peer-to-peer support groups include:
Offer a safe place to discuss the frustrations of living with dementia.
A place to feel safe.
A group to have fun with peers, and share the joys of dementia!
Reduces apathy and depression.
Shows more newly diagnosed people they are not alone.
Assists group members to develop new skills in relating to others.
Modify and establish existing self-management activities.
Help and support members to overcome blocks and barriers or to seek alternatives.
Allows people to ‘open up’ and discuss their situation and feelings.
Discussions on practical skills and guidance – such as how to design and stick to a treatment plan, a lifestyle change, or manage living with the symptoms of dementia and the cognitive and other disabilities.
Provides new coping strategies – share solutions and learn from each other’s experience.
Provides strategies for managing any stigma associated with dementia.
Provides strategies for managing the stress we sometimes experience when dealing with care partners, and others who do not have a diagnosis of dementia.
Our support groups have had one small study done on their effectiveness, and many of the recommendations made afterwards, were in fact already being implemented. We only discovered this when we shared the recommendations and findings with our cohosts at that time, some who then said they had been interviewed – and at the time said they had simply forgotten that we do provide facilitator training and support for co hosts, and have always provided cohosts with details of current and new members of their goups, and so on. This is one of the challenges, or perhaps nuances that need to be considered by us all, but especially when people with dementia are interviewed or complete surveys in research or in other projects.
Whilst family and friends, and even professionals working in the field of dementia can be supportive to some extent, they don’t really know how we feel, or even why it can be so hard for us sometimes. Many of the disabilities caused by dementia are invisible or sporadic, so it is sometimes difficult for people without dementia to understand the day-to-day life and difficulties people with dementia face.
At DAI we hope our peer-to-peer support rgroups for people with any type of dementia will become the norm; that doctors and health care professionals will refer their patients to us, and peer to peer support will always be included in all post-diagnostic pathways and care plans, from the time of diagnosis.