Health and social care professionals working with people with Young Onset Dementia should clearly signpost to online peer support as part of post-diagnostic care
Guidance
Health and social care professionals working with people with Young Onset DementiaOnset of dementia symptoms before the age of 65. More should clearly signpost to online peer support services, to help people find the support they need.
Explanation and Examples
Peer support can be highly beneficial for people with Young Onset DementiaOnset of dementia symptoms before the age of 65. More and make the post-diagnostic period more positive. It can contribute to different aspects of social health: their ability to fulfill one’s potential and obligations, management of their own life and participation in social activities. People can share experiences, information, and coping skills in these areas. This goes beyond support that health and social care professionals, or friends and family can give. Given these benefits, peer support should be accessible to every person living with Young Onset DementiaOnset of dementia symptoms before the age of 65. More. However, access to specialised (support) services varies widely across the UK. Therefore, online peer support could offer a solution.
Our research showed that people with Young Onset DementiaOnset of dementia symptoms before the age of 65. More experienced a severe lack of support and signposting to (peer) support services. Benefits of having peer support online included not having to travel, not having the sensory overload of being in a room full of people, and finding it comfortable to join from their own home. Having their support group gave many of them hope again, and some called it their lifeline. Our online survey showed that the main reason why people did not use online peer support was that they did not know it existed, or they did not know where to look for support. Some of those who did not have experience with online peer support would be interested if they knew where to find it. This indicates a need for professionals to clearly signpost to (online) peer support services and information.
Themes
Online intervention Peer support People with dementia Young Onset Dementia
Target groups
Clinicians Health care providers & patient organizations Professional carers, cliniciansType of evidence
Esther Gerritzen (DISTINCT ESR2)
Focus groups, online survey, and individual interviews with people with Young Onset Dementia in the UK.
References
Gerritzen EV, Kohl G, Orrell M, McDermott O. Peer support through video meetings: Experiences of people with young onset dementia. Dementia. 2022;0(0). doi.org/10.1177/14713012221140468
As training manager of INDUCT, I am responsible for the overall coordination and organization of the individual and network-wide training of our 15 ESRs. My main task is the organization of five INDUCT Summer and Winter Schools. Together with the local and management team, we identify needs and interests among the ESRs, compose a varied program for the week including training sessions, project meetings and social and networking events, invite academic and non-academic expert speakers, organize practical matters, and afterwards we evaluate the event, write a report, and try to incorporate all suggestions in our future training events.