South Petherton couple push back negative dementia stereotypes

Dementia is a progressive, terminal condition caused by diseases of the brain, such as Alzheimer’s and vascular dementia.

Common symptoms include changes in memory, thinking and behaviour, and everyone’s experience is different.

Symptoms worsen over time, but with treatment and support for the person affected and their family, people can live well with the condition for some time – in some cases, years.

Aileen Channer from South Petherton, whose husband Barry, 79, has frontotemporal dementia, said: “Barry was diagnosed with dementia in 2016 after his behaviour changed.

Barry Channer making pizza at Filo Project group (Image: Filo Project)

"He’s always been a sociable person but he became outspoken and would make personal remarks to people’s faces or make things up.

“During Covid, I noticed that the isolation was making him more introverted, so I signed him up to go to a local dementia daycare group run by The Filo Project, a local not-for-profit and he’s been going every week since.

“The regular socialising has been really beneficial and I think it’s what’s kept him going.

“Because of his type of dementia Barry hasn’t been able to have a conversation since the early stages, but he has a great time at his Filo group hosted by Sarah and comes back so happy.

“He doesn’t speak much now as he’s in the later stages of dementia, but Sarah shares photos with me of what they get up to.

“Now Barry mostly listens in and enjoys doing things like art, but he used to have a go on the piano and enjoy hearing her play the guitar, or go for walks up Ham Hill and to the pub for a coffee in wintertime.

"Dementia doesn’t stop him from enjoying social situations.

“There is a lot of stigma around dementia, most people are very kind but some don’t know how to act or what to say once you tell them.

“I recommend being open about your situation and getting your loved one settled somewhere like The Filo Project sooner rather than later, so they become used to it and have that regular social interaction as it can really make a difference.

“My motto is always to embrace things and carry on regardless. We kept living our life after Barry’s diagnosis, and I think that really helped both of us.”

The Filo Project is an award-winning social enterprise offering unique dementia daycare within hosts’ homes for small groups of socially isolated older people with early to moderate dementia.

The aim of a Filo day is for it to feel like a relaxed day spent with friends. Hosts collect small groups of clients and drive them to their homes for a shared, joyful day and home-cooked lunch.

The day is not prescriptive and activities flex to each group’s interests and abilities, such as baking, jigsaws, singing or crafting.

The more intimate setting allows people to grow in confidence, make friends, and reduce their risk of physical and mental health issues associated with isolation.

"Meanwhile, family carers have regular, extended respite from the challenges of looking after a loved one with dementia."

Barry Channer up Ham Hill with Filo Project group (Image: Filo Project)

Libby Price, co-director of The Filo Project, says: “A dementia diagnosis is awful and unwanted but it doesn’t mean the end of a fulfilling life.

“Nearly a million people in the UK are living with dementia, and many are still able to enjoy life, contribute to the community, and even work.

“Yet we tend only to see terrible stereotypes and the later stages of dementia depicted on TV or in film.

“Every day at Filo groups we see how life with dementia can still be a life well-lived. Dementia takes so much from families and is incredibly challenging.

“But it’s not a living death. People can still flourish and experience joy and humour if we treat them as the valued person they still are.”