Helping people living with dementia have a voice

41 - Gill Phillips and Ken HowardGill Philips and Ken Howard launched a campaign to help people living with dementia have a voice. Ken lives with younger onset dementia, having been diagnosed with Alzheimer’s about eight years ago. Together, Gill and Ken have been sharing his story and the message of treating people with dementia as human beings with real lives and aspirations, and that people can live well with dementia and speak out in their own right. A lot of their work is just talking to people, helping them to see things differently.

Talking about his condition, Ken tells people clearly how they can best help: “In order to slow the process down, people have to be encouraged to be proactive. This is the biggest challenge for the health service. They must no longer say that there is nothing that can be done, and just talk from a medical perspective. People should focus on quality of life, right through to the end and keep the person as good as they can be, even though I appreciate that a more medical approach is needed in the final stages”.

Ken and Gill share their messages in a variety of ways, including through Google Hangout, Webex, via workshops and through speaking at conferences.

They have held Whose Shoes? events in a variety of settings, including a local church, Essex County Cricket Club and Dundee Utd FC. At these events, they discuss scenarios that are hard-hitting, challenging and real. They get people talking together who wouldn't normally talk.

The conversations are always interesting and can often be really creative, leading to real actions.” explained Ken. “Communication is key. If people talked to each other with real understanding, then there would be no problems”.

One workshop was commissioned by a family as a legacy to their late father, bringing health professionals together to learn about the small things (often huge for individuals) that really make a difference.

Communicating with local communities

Ken was helped by Patient Voices to make a digital story that has been used in workshops, including a series of over 20 Whose Shoes? events in Kent, run in partnership with Age UK and supported by the local Alzheimer’s Society, to build dementia friendly communities. These events reached about 500 people, many of whom had never thought about dementia before and most of whom pledged specific actions that they would follow up. These events were attended by many people from the local community including the Women’s Institute, the National Trust, Kent Police and Community Wardens. Staff from local businesses also attended, notably the local bus company who were interested in further training for their drivers, two major supermarkets and some local independent companies. Barry, who cares for his Mum with dementia, came to five separate workshops, with his sister and niece, just to meet others and learn as many tips as he could.

The highlight of the year for Ken was when he and Gill co-presented to about 200 people at the European Alzheimer conference in Glasgow. Explaining how their campaign has helped him to connect to others living with dementia, Ken told us "Before meeting Gill, I didn’t know anyone with younger onset dementia, and it felt very lonely. Now I know so many people from across the world living with dementia, actively doing what they can to combat the disease and raise awareness."

The next steps

Ken’s personal pledge was to encourage peer support at the time of a dementia diagnosis. This is starting to come to fruition, with collaborations locally and nationally.

Ken and Gill continue to share their message: Ken is on the Dementia Strategy Board in Coventry and gives talks to schoolchildren, university students and staff groups. They are planning workshops for people who have recently been diagnosed with dementia, videos for the Alzheimer’s Society and more work with Warwickshire's campaign group. Ken is becoming a bit of a celebrity: age 60, with long hair and riding a Harley Davidson, he immediately breaks down dementia stereotypes. Ken and Gill are now working to arrange a ‘hairy biker tour of Scotland’ where Ken will ride his Harley and take his messages to remote communities.

Gill and Ken believe that one person can make a difference. Ken says: "For small people trying to move forward this massive NHS, any change is a big deal. The biggest change is when people start to listen and take notice. This would never have happened without our campaign. If we can talk to somebody high up in the NHS about the work we do, they could get a pretty good idea of how to help someone with dementia!
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