Alzheimer's Society Innovation Hub

‘Getting lost in my head’ helping Totally Blind people living with Alzheimer’s Disease

My amazing mother has been totally blind since the age of six (when caught in an explosion) and has always been our families’ phone directory, memory bank and font of all knowledge - inspired by the daily storytelling of radio she has always been full of joy and hope.

Now in her 80s, she relies on Alexa to answer her growing number of daily questions and is finding herself “getting lost in her head” as her Alzheimer’s progresses. I cannot find any information to help people caring for blind people living with AD. A searchable bank of ‘living with AD tips’ would be great.

edited on Oct 17, 2019 by Natasha Morgan

Lindsey Ambrose 3 weeks ago

I like this idea. As well as people who have no vision from birth, there are many people who lose vision as they go through life. A good set of tips could be inclusive of all those people, while recognising the particular challenges of people who may for example be Deaf-Blind, have learning disability too, have always had little or no vision, or who are adjusting to lost vision in later life.

Alexander Watson 3 weeks ago

It would be great if Alzheimer’s charities could come together and concrete with RNIB

Tim Shakespeare 2 weeks ago

This idea has been advanced to the next phase

Tim Shakespeare 2 weeks ago

This idea has been moved back to the current phase

Marianne Coleman 1 week ago

Lots to unpack here and RNIB already do some great work, but surely a quick win is to record Ron Coleman's Alexa manual and break it down into bite size tips for people living with sight loss to access via Alexa questions so they can tweak Alexa themselves.

I also see lots of carers of people living with dementia asking for activity ideas for their loved ones who have sight loss - perhaps some co-production workshops involving activity coordinators, carers and people living with sight loss (who do and do not have dementia) could help to produce some guidance on dementia-friendly activities for people living with sight loss and dementia?

I think also there's some interesting ideas surrounding physical activity for people living with both sight loss and dementia. There's research happening in both fields separately, so why not combine the two?

Also dedicated dementia training for all eye clinic liaison officers would be well worth funding.

Serena Snoad 6 days ago

There is scope here for partnership working with other charities, targetted focus groups with service users and the co-production of relevant resources.

I've thought for a while that we may need to consider support for co-morbidities which is especially relevant for older people who often have more than one illness. We recently completed a pilot project on Talking Point around dementia and cancer so could be part of a wider conversation on this.

Tim Shakespeare 1 day ago

This idea has been advanced to the current phase