Did you miss the recent Alzheimer’s Society and DCAN event ‘Left to Cope Alone’? Not to worry, you can catch up here…
The event was introduced by DCAN’s Ian McCreath and featured Keilan Arblaster, Senior Policy Officer at the Alzheimer’s Society, who introduced the report. Bringing their personal stories to the group were Ian Deakin who works with the Alzheimer’s Society Dementia Voice Team and who is living with dementia, and Philippa Russell of Carers UK, who has experience as a carer.
The online meeting followed on from the Alzheimer’s Society ‘Left to Cope Alone’ report which looked at the unmet support needs after a dementia diagnosis. The aim of the report was to answer four key questions:
- What do people want from support after diagnosis?
- What do people want from an annual dementia review?
- Are people’s support needs being met?
- What is the impact of support needs not being met?
Over 2,000 people affected by dementia contributed to this report and the discussion continued at the online event.
Attendees of the event included professionals, people with lived experience of dementia, and carers. Breakout sessions provided the opportunity for people to share and discuss experiences and thoughts, which will be considered in future DCAN meetings and projects – each of these breakout groups included at least one person with lived experience of dementia.
Just some of the key points that came up in the meeting included:
“The need to look at people and their families comprehensively, not just looking at their diagnosis and medical needs, but what do they need for their social and emotional wellbeing?”
“The chain of support not linking up – people being lost from the system post diagnosis and then not finding an easy route back into it until there is a crisis.”
“Lacking social groups to refer to that were lost in pandemic and never recovered, feels like more demand, and less support available.”
“GPs being too overwhelmed to do reviews.”