Dr Liz Dennis is Co-director and co-Founder of The Filo Project, an initiative that enhances dementia care by inviting small groups with early to moderate dementia into hosts’ homes, blending personal care with academic research. Here she reflects on the transformative power of curiosity in dementia day care.
Dementia has been cited as the biggest social challenge of our time, with numbers set to reach 1.4m by 2040. TV and films depict the worst stereotypes, the loss of self and shrinking away from life. True, dementia takes so much from families and is incredibly challenging. But it’s not a living death.
People with dementia can flourish and experience joy and meaning if we treat them as the valued person they still are and hold curiosity at the heart of their care. This is at the core of The Filo Project model and we see the effects every day.
A Filo day involves groups of four people with early to moderate dementia being collected by a Host (an employed, not voluntary, position) who takes these clients back to her or his own home for the day. There is no set schedule, except lunch, yet the consistency of groups and hosts allows friendships to form and patterns to emerge, specific to each group and the individuals within them.
The more intimate, homely 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.
We are proud of the outcomes we achieve and below is a representative testimonial;
‘’Dad doesn’t rely on me so much. He’s gone from telephoning me 9 times a day to possibly 4 times a week. We seem to have part of his old self back. Dad had been a hostage to his vascular dementia, feeling uneasy in public not knowing what to say or do, The Filo Project has given him a new lease of life and a greater way of coping with his illness.’’
So why does our type of support yield such results? Memory-loss is perhaps the most prominent of dementia symptoms, but our Hosts are experts at drawing out peoples’ deeply sedimented knowledge and capacities, by applying curiosity to their care.
These capacities are highly specific to each individual and might reveal themselves as an interest in local history, poetry reciting, encyclopedic knowledge of jazz piano, or even veg-peeling deftness.
To discover this information Hosts need to be curious about people and the world, and perceptive, responsive listeners. Once unearthed and harnessed, these kinds of memory or knowledge reinforce people’s sense of identity, leading to increased confidence and even symptom reduction.
Social care needs to be sociable. Social isolation correlates with other high-profile health risks, such as smoking and obesity. Old age can make accessing existing friends difficult, added to the sad fact that social circles diminish. Our small group model provides ease of access to manageable socialising, which is important; socialising with contemporaries, with whom one has a connection on a regular basis, means that clients feel a valued part of a community.
I believe sociable social care should draw as much hope and herald as the new dementia treatments, donanemab and lecanemab, which reportedly slow progression of Alzheimer’s by a third. Neither have yet been approved for use in the UK and even if they are, they are only effective for people in the early stages of Alzheimer’s. They are also very expensive, costing reportedly approximately £20,000 per person per year.
The drive within social care is to keep people with dementia living in their own homes for as long as is safe and manageable. It’s what our clients, families and cash-strapped local authorities want.
Given that our kind of sociable social care makes real and tangible difference to people living with dementia now, and at a fraction of the price, it doesn’t make sense that this resource isn’t being exploited more.
As Prof Sube Banerjee (who led the development of the UK National Dementia Strategy) says, “Dementia is a complex illness that demands complex solutions, there is no one size fits all and no magic bullet.” My call to the new government would be for them to take on board this perspective and invest in social interventions effecting positive change for people now.
@FiloProject
thefiloproject.co.uk
