“We didn’t know what we didn’t know”: what one family’s dementia journey tells us about care in Nottingham’s African Caribbean community
He came to Nottingham from the Caribbean in the early 1960s, part of the Windrush generation. He worked here for decades, raised a family here, and cared for his wife through her final illness. When dementia came for him, his children gave him what a neighbour called “platinum care” — fresh cooked food, spotless clothes, a place at the centre of every family occasion — right up to his death at home earlier this year.
And yet, at almost every turn, the system made it harder.
We sat down with two members of the Mango Tree Dementia Support Group to hear their story. What they told us should give everyone involved in dementia care — commissioners, GPs, social workers, community organisations — pause for thought.
A diagnosis with no map
Three years passed between their father’s dementia diagnosis and the first time any professional told the family, plainly, that dementia has stages — and that he had reached the last one. That conversation happened days before he died.
In between, the family navigated incontinence, falls, weight loss, swallowing difficulties and the sheer physical labour of care with no training, no roadmap, and information that arrived — when it arrived at all — as “pamphlets everywhere you go” that no exhausted carer has time to read. Carer’s allowance, direct payments, paid help: each was discovered through personal networks and persistence, never offered.
The family’s proposal is simple and compelling. When you’re diagnosed with diabetes or high blood pressure, you’re sent on a structured course. Why does no such course exist for the designated carer at the point of a dementia diagnosis?
When “safeguarding” silences families
When their father began falling from bed, the family placed a mattress on the floor beside him as a crash mat. The response from services was a single word: safeguarding. Asking about bed rails prompted talk of “deprivation of liberty.”
“To me, safeguarding means they’re going to take him away,” they told us. “So I shut up.”
That fear was not abstract — it drew on the real experience of many African Caribbean families up and down the country. For African Caribbean families, wariness of statutory services is learned, not imagined, and safeguarding language highlights historical mistrust. Its effect was the opposite of safety: a family stopped telling services about falls at the very moment his needs were escalating fastest. Safeguarding language, used without explanation or compassion, does not protect people. It silences them.
Culture is not a footnote
This is not a story that happens to involve an African Caribbean family. Culture runs through every part of it.
The only day provision that worked was culturally specific and familiar — and when it closed and relocated, he sometimes refused to go. Food mattered: the man who had cooked rice and peas for everyone needed familiar food to keep eating at all. The community groups that exist for Caribbean elders, the family observed, “are not really for sick people” — they assume you are well enough to get yourself there. And long after he could no longer read a newspaper or work the TV remote, he could still play dominoes. And win.
Caring for a parent at home, to the end, as he had cared for their mother, was a commitment of love, duty and legacy. What they needed — and eventually found at the Mango Tree — was a space where other carers “get it culturally”: no explaining, no translating, just understanding.
What needs to change
The family’s experience points to changes that are neither complicated nor expensive: a carer’s course at the point of diagnosis; honest, early conversations about what lies ahead; proactive carer’s assessments under the Care Act; decisions based on the day-to-day and cultural reality of dementia rather than a single observed snapshot; safeguarding conversations framed as “how do we keep him safe together?”; and investment in culturally appropriate provision that works for people who are unwell — and for the families who care for them.
Read our case study
The full anonymised case study — “We didn’t know what we didn’t know” — tells this family’s story in depth, including detailed recommendations for services and practical suggestions for other families, from what to ask for by name to who to call. Read full case study here
If you are caring for someone with dementia and don’t know where to start, Dementia UK’s Admiral Nurses offer free specialist advice at any stage — something this family wishes they had known.
About the Mango Tree
The Mango Tree Dementia Peer Support Group is a culturally safe, community-led space for African Caribbean carers, running at the Broadway Cinema on a bi-monthly basis. Family members and anyone in the community affected by dementia can attend. Sessions offer peer support, culturally relevant activities, guest speakers and practical information — in a space where you don’t have to explain, because the people around you get it.
The group was founded by Bettina Wallace, who said “The group is a safe and welcoming space for anyone from the African Caribbean community to attend [and] is primarily aimed at carers, having been one myself and know the lack of support there is out there, to just talk and share ways of looking after loved ones”
To find out more or join a session, contact Telephone: +44 7543 51291
Email: themangotree090@gmail.com
