This Dementia Awareness Week, two members of C4PC’s Programme Board have a recorded a powerful and insightful conversation about what personalised care means in the context of dementia.
Ronald Amanze is founder of ‘Talk Dementia’. He is also a Black Dementia Champion with the Alzheimer’s Society, a Dementia Diarist with DEEP and an Ambassador for The Stroke Association. Ronald had a stroke and sustained a brain injury before being diagnosed with dementia a couple of years later. Ronald shared his thoughts with Ian McCreath who is Personalisation Lead at the Alzheimer’s Society.
Ronald discussed the importance of the role of social workers and the difference it made to him, when he had a social worker who was supportive: “She persevered with me. She continued to be nice to me, even when I was being stubbornly uncooperative with her, missing all my appointments and the things she set up for me; she persevered. And she always did it with a smile and gentleness, and with a strange understanding, like she knew something was wrong with me and she didn’t want to give up on me.
“She came into my life when I’d given up on life; when I was not eating, when I was falling apart and she put me back together again as a result of the support she put in place for me.”
However, he feels that the rigidity of the system can often get in the way, preventing person-centred care from really taking place:
“I see the dilemmas they [social workers] have and I’m thinking, this is so easy to deal with, why don’t they recognise that the manual they’re working from needs to be changed. You can do things differently.”
Ian reflected on how too much emphasis on support and care delivery could be problematic: “… it is looking at the problems or it’s transactional in that ‘we have this offer and this is what we can do for you‘, whereas what we really need is to create that space where it’s more of a partnership and more equal.
“What social care needs to be about and what the support systems need to be about is less around the rule book and doing things that they [care professionals] are comfortable with and much more about listening to people – understanding where they’re coming from; what gifts, talents, connections and networks they have and seeing what support you need to do what you want to do.”
Throughout the conversation Ronald explained how his care has not always been focussed on what he felt he needed or wanted. At times describing it as support which ‘encouraged him to become reliant’ rather than independent: “They should recognise that people with a dementia diagnosis, especially early onset dementia have got so much ability and, as opposed to encouraging them to be reliant on services, they should be encouraged to benefit from services that support the person to continue to live life to the best of their potential and ability. Failure to do that might result in that person not being as well as they can be, deteriorating faster and impacting on social services and the cost of looking after them.”
An artist manager and music producer by background, Ronald is passionate about the role of creativity in improving the quality of life experiences for those living with dementia and mental health conditions. Coming out of the other side of the pandemic he has a strong ambition to set up a social enterprise bringing together the creative industries with people living with dementia: “I still have a valid purpose in life, around fulfilling my aspirations and dreams. When you’re doing things that are meaningful it actually is the best therapy for you often.”
Ian said: “Although dementia doesn’t have a cure, we believe that the care system can be improved so we’re calling on the government to transform and reform social care.”
You can find out more information about the Alzheimer’s Society campaign to ‘Cure The System’ here.
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