‘I don’t recognise my wife’s face any more. The light is going out… where do I find the support we both need?’
‘… very thankful for the book you wrote. There’s so much insight…’
It’s four years this month since that book was published and I still get messages like these from readers who have found it valuable. I think because it tells a story that matches theirs, at least in part.
Four years on, what has changed? There have been huge steps forward in general awareness, in pressure on governments for more recognition and action, and recently some promising results from new drugs. Here in the UK the Archbishops’ Commission has been one of several groups calling for a radical re-imagining of care. The voices of those actually living with dementia have increasingly been heard and recognised.
But there has still been no real change in provision for social care.
The role of caregivers (‘informal carers’, ‘care partners’, ‘family caregivers’) has always seemed crucial to me (having been one myself). So it has been good to help run workshops for churches on how we can better recognise and support those affected by dementia, especially the caregivers. The workshops led to a monthly support group, both for those directly affected by dementia and for people in churches who are already seeking to support them.
Last year we turned some of that material into a short series of videos and discussion material: ‘Caring for Caregivers and building Support Teams’.
Good to see progress. But there’s still a long way to go.