In late 2018 I carried out a survey of the day to day experiences of people affected by dementia in Shropshire, Telford and Wrekin, on behalf of the Dementia Action Alliance. The main purpose was to find out what people living in this area wanted us to focus our work on in the next couple of years.
What matters to them.
As far as I know this sort of consultation has not been carried out before here.
No one has thought to ask what we people affected by dementia think, how we experience day to day things. Even Dementia Action Alliances and similar groups often don’t include people living with dementia, which is entirely missing the point.
Don’t assume we cannot take part. It makes an ass of you. Involve us.
You can read the report of the survey findings here (copy into your browser):
30 people completed forms, on paper and online. 13 were people living with dementia; 17 were care givers.
Not a huge response but significantly consistent findings.
There are, apparently, over 6,500 people in the Shropshire Telford and Wrekin Dementia Action Alliance area living with dementia. That means probably as many care givers, given that some plwds will have more than one family member or friend helping.
I sent copies to local branches of Age Uk and Alzheimer’s Society, and to the Memory Service. I tweeted the survey monkey link numerous times.
But we only got 30 out of 13,000. Sad, but still it is a start, and it is usable, if not statistically robust.
But a big question I have is this:
How can we reach these people?
How can we contact them, inform them, create supportive networks?
These 6,500 have brain disease, yet they are not connected to any support network.
There ought to be a way of collating all those with a diagnosis into a single database for emailing, or paper mailing.
There ought to be a service dedicated to keeping them informed of local activities, newsletters, local groups.
That service could provide two way communication and networking.
Anyone starting a support group, like DEEP, could have the details sent to anyone on the list in the appropriate area.
Care givers could all receive information about services and benefits and support available…in one place.
The data is in GP records. Carers should be flagged on systems, as well as people living with dementia. So it is all there.
But where there is no will, there is no way.
This survey shows that key difficulties or priorities for people affected by dementia are:
GP practices are not dementia friendly
Making medical appointments is challenging
Poor, inappropriate care in hospital
Lack of understanding of dementia by NHS staff
Lack of consistent and complete information about support and benefits, easily accessible and in one place
Lack of support for care givers to maintain their own health and individual lives
The need for inclusive social activities and groups that are “dementia friendly”
Supermarkets came fairly high up the priorities for action too, and it is heartening that in recent months several supermarkets have begun to work to become more welcoming of people living with dementia.
So we know what to focus on this year.
Every GP practice should become dementia friendly.
Health care staff training needs to be improved hugely.
Hospitals should sign up to and implement the Dementia Friendly Hospital Charter.
Information and access to support and benefits for care givers need to be improved hugely.
We need to continue to create Dementia Friends, and to promote understanding of how to make activities and groups accessible for people living with dementia.
And we need to develop relationships with supermarkets to help them become dementia friendly.
That’s quite a list. But it is all achievable, with commitment, strength, and determination.
We will need to use different approaches.
Softly softly, touchy feely, for some.
Shout from the rooftops for others.
But just never give up. Keep pushing at the doors till they open.
Shame those who should know and should be doing better.
Support those who need understanding.
As 2019 begins…let’s remind ourselves.
We are not alone in our work. And we need each other to make this work.
Thank you, everyone who has given their time and effort to make Shropshire, Telford and Wrekin a better place for people affected by dementia.
Onwards, and upwards.