Real stories
Reminiscence toolkits to help African and Caribbean people living with dementia

Carl Case, in Sheffield, explains how the right resources make a difference for people affected by dementia.

Carl Case
28 March 2023
medium read

My mother-in-law Adella, who I knew as Ma, was diagnosed with dementia 16 years ago. At an early stage she was having difficulty communicating and with levels of attention.

One day, I brought out an album of vintage Jamaican postcards and started to go through them with her. What amazed us was, her long-term memory was astute.

This continued even when she was having difficulty recognising some of her grandchildren. 

Carl Case

Storytelling pedestal

Ma, the family matriarch, had always been a storyteller, a talent we thought that she had sadly lost. However, whenever she viewed the Caribbean postcards, she returned to her storytelling pedestal, identifying locations, sharing stories and leading conversations.

This was thrilling for us all and was the motivation behind developing the culturally appropriate African and Caribbean Dementia Toolkit.

There’s a saying that ‘dementia doesn’t discriminate’. But it does have a disproportionate impact on specific ethnic communities, with African and Caribbean people facing a higher risk of developing dementia and dying with dementia at younger ages than white people.

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My mother, a nurse, came to the UK in the 1960s and cared for people living with dementia. It was deemed then by many as a ‘white person’s illness’ because at that time, many Black people in this country – being of the Windrush generation – were very young.

Culturally appropriate

The toolkit includes a large A3 album of vintage photographs, a guide for carers, a multisensory ‘memory box’ of vintage objects and an online film archive.

All of these serve to trigger memories from when the person was ‘back home’.

It’s great when I see people in care settings re-energised and joyously singing along to Vera Lynn. But I always notice a massive gulf, as many Caribbean and African elders don’t know such songs. This toolkit ensures that care professionals can deliver culturally competent, person-centred care.

For families, it’s a valuable resource tool, enabling children and grandchildren to enjoy special moments of connection with their loved ones once again.

The person can tell stories they have rarely or never told, sharing family heritage and anecdotes which family members can then record in the ‘Life-Story’ sections.

Professionals within care homes, along with many grandchildren, will not recognise many of the artefacts. The ‘toolkit guide’ and ‘learning journal’ ensure that even someone with scant knowledge of Africa or the Caribbean can immediately improve the wellbeing of the person they’re engaging with, enabling them to become the storyteller again.

Making a difference

With accompanying training, the toolkit is boosting the skills and confidence of professionals in care settings, developing more meaningful relationships with African and Caribbean elders.

The University of Sheffield is working on evaluating the toolkit and we are currently developing South Asian versions.

With the cost of living crisis, we’re looking for funding in order to share them widely with faith and community-based organisations, enabling all to live well with dementia.

The activities handbook

A handbook for anyone who is caring for a person with dementia. It will help you suggest enjoyable and engaging activities for the person you’re caring for.

Find out more

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2 comments

Carlton Smith
says
05 April 2023 at 8:46 pm
The training that Carl and his colleague delivered to our team was engaging, informative and interactive and within our care home me and my colleagues are learning so much from our residents as we engage in the toolkit together. The video library is great as they like to see how things in other Caribbean islands were similar to or different from the country that they came from and sing along together to the old tunes.
Carl Case
says
03 April 2023 at 11:55 am
I would like to thank Jessica and Danny of the Society’s ‘Dementia Together’ magazine team, for approaching me in order to highlight aspects of good practice in addressing some of the many issues associated with people from these communities. Members of which are 22% more likely to develop dementia, living for shorter periods dying at a younger age as a result of the disease than those in white communities. https://www.theguardian.com/society/2022/sep/18/britons-of-black-and-so… Reflecting back to the early 1900s when Dr Alois Alzheimer was selecting several doctors from around the globe to be his research assistants in Germany, one of the key ones to be selected, was an African psychiatrist, Dr Solomon Carter Fuller, whose works includes some of the earliest publications on dementia in America? 120 years plus later, if Dr Solomon Carter Fuller was still with us, may he be asking the type of questions that I and many others are frequently asking? - What are the major organisations and charities doing to address such disparities & provide appropriate support? - In what ways can they all do more? - In what ways are service providers utilising the consistent research findings, to adapt services, ensuring that they are increasingly accommodating, accessible, and appropriate, for the needs of these communities? - On the podium at major national conferences that so many of us attend, where are the voices of the Black leaders in the field sharing their insights, experience & good practice? - Why are Black individuals often not being diagnosed with Alzheimer’s or related dementias & why are too many seeking treatment only when the disease process is more advanced? - Is there referral bias or differences in diagnostic thresholds applied by providers? - Do Black patients have to present with more severe clinical presentations, to warrant a diagnosis of dementia from physicians than white patients? - How culturally inclusive are the services available for us? - Are staff truly trained and empowered in the delivery of culturally responsive services? - People of African descent are frequently not part of important studies, and given the lack of evidence collected, do we have the assurance that current drugs & therapies are fully effective for our communities? - In what ways are our colleagues in the field personally and professionally contributing in reducing such disparities? Dr Fuller looking down now would be bewildered as to the amount of ground there is still to be covered, in order to adequately address the disproportionate devastation caused by dementia within these communities. Some good news however, includes that the Alzheimer’s Society has recently appointed Nasim Minhas to the new post of, Associate Director of Equality, Diversity and Inclusion, and she is being proactive in reflecting on, addressing and influencing others to address the key issues. So progress is being made, the pace of which needs to be rapidly accelerated throughout the wider sectors, as we ALL are in ‘dementia together’.