Married to Alzheimer’s: A manifesto for dementia-friendly communities

One of the key reasons I started to write this column was so that other people in my position knew they were not alone. I want to be honest and direct about what caring for someone with dementia really means.

Another reason for writing, and for my involvement in dementia campaigns, is the lack of recognition and support for the role of the carer. I keep on saying it: we play a vital role and our voice needs to be heard.

I do not want good done to me, or for me. I want to be able to access support systems and information, and to cherry-pick what is best for Tony and me.

I believe grassroots community activity and projects are the way forward. At this level, promises can be kept. Projects can be designed for specific communities and their particular needs. Top-down planning and legislation are much less effective. Trickle-down can work only if the trickle-down is not obstructed by people who think they know best, but do not understand or have no experience of dementia.

The British general election will be held on Thursday, May 7th. This will be the first time in decades Tony and I will not be involved in the campaign.

For Tony, it’s because he is now too frail to be pounding the streets electioneering.

For me, it’s because Tony is my priority. Instead we are focused on Dementia Friendly Todmorden (DFT), the project that aims to make our town a more dementia-friendly community.

I know I have said it many times, but I am constantly surprised by how many lives have been touched by dementia.

Our group is made up of such people, who have given their time, support and tremendous generosity to move this project forward.

For Tony, this is about leaving some kind of legacy for the place where he lives and has been very happy, so others coming after him will reap the benefit of the work we do now.

Impact over generations

The official launch of Dementia Friendly Todmorden will be on Saturday, May 9th. Tony’s daughter Cherie will be there as the main speaker. She knows all too well the impact of dementia. Her grandma, Tony’s mother, had the disease and her dad is now living with it.

DFT runs a dementia-friendly lunch club that opens on the first Saturday of each month. We plan to open more often, as people get to know about it. Tony’s contribution is to chat to people and make them feel welcome. He does this with skill and enthusiasm, although he is tired by the end.

We have a good kitchen team and, hopefully, our waiting-on skills will improve with time. My only previous experience as a waitress was decades ago when I was a student. I lasted less than an hour in the job before being fired. Apparently, it is not acceptable to ask parents to prevent their children marauding and/or shouting.

Among other plans, DFT is currently organising the purchase of more benches for the town centre. Being able to sit down and gather thoughts when necessary is important in helping people with dementia to feel confident and secure. There are certainly moments when Tony needs this kind of relief. Importantly, extra benches will make life easier for everyone, not just those with dementia.

Election manifestos

I will be interested to see what is in the manifestos of the various political parties. Certainly, the National Health Service will be a major issue, but I wonder if dementia will get any more than a cursory mention by any of the parties.

The G8 Dementia Summit in London in December 2013 recognised the future havoc the disease will create in economic, health and social spheres if a cure cannot be developed.

It is incredibly frustrating that high-level international meetings promise so much, but the domestic political agenda delivers so little.

Todmorden is not the only community aiming to become more dementia friendly, yet there is no funding in the UK for grassroots projects such as this. It has to be achieved through fundraising and donations, meaning sustainability cannot be guaranteed.

Of course, Ireland also has dementia-friendly communities. Atlantic Philanthropies has funded some pilot projects. The seven communities involved are located in Co Donegal, Galway city, Ballina/Killaloe in Co Tipperary/Co Clare, Mallow in Co Cork, Callan in Co Kilkenny, Cavan town and Co Wicklow.

Unfortunately, this three-year funding will run out at the end of this year, leaving those projects to face the same financial problems as those in the UK. Sustainability is crucial for delivering help and grassroots support for those with dementia and the people caring for them.

A fact, even in these economically stringent times, governments need to respond to.

Steph Booth lives in the north of England with her husband, the actor Tony Booth.