The importance of person-centred dementia care that embraces someone’s culture

Faith Walker has witnessed the best and worst of care while supporting her mother, and she’s passionate about never losing sight of the person with dementia.

Read this story in Welsh

‘I can’t find the words sometimes to explain the depth of pain, looking at someone who lived life to the fullest and was such an amazing person,’ says Faith Walker of her mum, who has Alzheimer’s and vascular dementia

Faith finds it difficult to recount some of her more troubling experiences. However, she’s determined to highlight the best and worst of the care that her mum has received since being diagnosed. 

‘I’ve seen it when it goes so wrong, and so right,’ says Faith, who lives in Cardiff, south Wales.

Faith Walker and her mum

This is also where her mum Ivy – known by all as Mrs Walker – is thankfully now happy and settled. 

‘My mum is a very strong lady, and there’s a strength in me somewhere that’s pushing me to tell my story. Maybe it’s from my mum. It’s what she would want.’ 

Close community 

Now 80, Mrs Walker grew up in Jamaica before coming to Port Talbot in south Wales in the 1960s. 

‘My parents were both from Jamaica, but they met and fell in love in Port Talbot,’ says Faith. ‘It’s where I was brought up, in a close-knit community of Jamaican, Welsh and Irish people. 

‘Yes, there was racism, but there was also kindness and love.’ 

Faith is one of 10 children, many of whom represented Wales at sport, while the next generation have enjoyed successful working lives.

‘That shows the depth of my parents’ love and resilience, and my mum’s influence on the grandchildren, who she loved so much,’ says Faith, who also recalls her mum’s brilliant time management skills. 

‘She’d come and watch our games and still manage her home so efficiently. We were all immaculate, well-mannered and had beautiful, healthy food to eat. 

‘We all think we were her favourite because she had a way of knowing each of us and loving us all equally. My parents were about education, health, love, care and being your best self.’

Respect and rapport 

Faith first noticed that something was the matter when her mum started to become less organised and efficient. 

‘I’m thinking, “Oh my gosh, Mum’s forgetting dates. Something’s not right,”’ she says. 

Mrs Walker visited a doctor and memory clinic, before receiving a home assessment from a psychiatrist. In 2014, they diagnosed her with vascular dementia and Alzheimer’s. 

‘I went into autopilot: “What can I get into place?”’ says Faith. ‘The community mental health nurse put us in touch with an occupational therapist, who was an absolute godsend. 

‘She gave Mum respect and didn’t treat her like she was ill. She connected with Mum, built a rapport and put her at ease. It was textbook – better than textbook.’

Faith walker and family, and her parents' wedding

Big decline 

Mrs Walker’s husband had died many years earlier and she was now a carer for her fiancé. But the death of her own mother and partner in quick succession led to a big decline in her health. 

‘It was grief, plus dementia, plus the lack of routine as a caregiver that made everything accelerate,’ says Faith. 

‘She’d say, “I’m losing my mind and I don’t know what to do.” That was heartbreaking. She was petrified, it was horrible.’ 

After a fire at home, Mrs Walker went to stay with Faith’s sister in Germany, then went to live with Faith herself. 

‘She was trying to be independent and formidable, but didn’t realise she was putting herself at risk,’ says Faith. 

‘Carers came morning, lunch and evening, as her support needs became greater. Then she went into a care home. That’s when the nightmare really began.’

Hell to heaven 

In August 2016, Mrs Walker moved into a large care home in Port Talbot, which it soon became clear couldn’t meet her needs. 

‘They never followed her care plan,’ says Faith. ‘They were supposed to encourage her to eat, but they gave her food and walked away, then said she wasn’t eating. 

‘They were short-staffed and wanted her to stay still, so they increased her medication. When she was soiling and trying to clean herself, they used the word “disgusting.”’ 

The following January, Mrs Walker was taken to hospital for a mental health assessment. 

Faith refused to let her mum be assessed in a hospital unit that had cases of norovirus, so Mrs Walker was transferred to a psychiatric hospital in nearby Tonna, Neath.

‘The nurses there were friendly and smiling. They were reassuring Mum,’ says Faith. ‘It was like going from hell to heaven.’

Faith Walker's family, and her mum

Dementia experts 

No nursing home was available that could fully meet Mrs Walker’s needs, and she stayed at Tonna Hospital for the next four years. 

‘Mum shouldn’t have been there, but in the time she was there, they made it the best they could,’ says Faith. 

‘They met her needs, cared for her, loved her. They tried different approaches, like creating a mock living room with family photos. 

‘They weren’t just dementia friendly, they were dementia experts.’ 

Faith was especially happy to see the hospital recognising and embracing her mum’s cultural needs. 

‘All the staff were white, like in the care home, but they listened and wanted to learn,’ she says. 

‘They had conversations about Jamaica as part of life story work. Occupational therapy activities included making dumplings, food that Mum could identify with. They told us to bring in CDs of music that Mum liked. 

‘They created a safe environment where Mum felt she could belong. Mum was at the centre of her care, and the family was included in the process. It was amazing.’

Culturally competent 

Last year, following pandemic restrictions on family visits, Mrs Walker was placed on an end of life care plan. Faith and the family were allowed in, one at a time, to say goodbye. 

‘I looked at Mum and in Patois she said, “I’m not ready to go yet,”’ recalls Faith. 

‘The next day I came in and she was sitting up in bed talking! The nurse said it was the power of love.’ 

Mrs Walker eventually came off the end of life care plan, before contracting and recovering from COVID. She now lives in a nursing home in Cardiff, a three-minute walk from Faith, having been discharged from hospital in June under NHS continuing healthcare. 

‘The staff are beautiful – really diverse and culturally competent. Mum is so chilled!’ says Faith. 

Faith is passionate about addressing health and social inequality, and promoting the importance of high-quality dementia care. She has supported organisations such as Diverse Cymru and Carers Trust Wales with research, resources and reports. 

She says, ‘Person-centred care is paramount to meeting someone’s complex and cultural needs, so never lose sight of the person who is living with dementia.’

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6 comments

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Such a touching story Faith. I so recall the days spent with your parents - mainly your Mum. Mrs Walker, when I lived in Port Talbot, South Wales 🏴󠁧󠁢󠁷󠁬󠁳󠁿

My father-in-law Eustece Medford also had Dementia / Alzheimer’s and I struggled so much to see him suffering towards the end of his life. He celebrated his 93rd birthday and died the day after. Miss him dearly, but always in our thoughts and family conversations.

I wish you all the very best and my regards to your family too, home and abroad.

Selina Medford (nee Deeble)

What a lovely story it really touched me. My husband has Alzheimer's and just had his first few days in respite but it didn't go to well and I feel he's declined a lot and I'm struggling to know what to do but after reading this story it gives me a bit of confidence in dealing with it all

A very emotional story. My Mum went into a care home in the summer. My sister and brother took her and Mum wouldn't get out of the car. She knew exactly where they were taking her and was not happy. They both said it was the hardest thing they ever had to do. The care home is OK but we all feel there is something missing. It doesn't smell, it's clean and tidy and only a small home in a large old building which is warm and fairly homely. Mum was very unsettled at first but eventually did start to settle. However she has lost so much weight but the staff say she is eating well. There do not seem to be any noticeable activities for the residents, no music, no radio. Just a large TV which is on constantly. The manager approached me and said he wanted to refer her to Mental health again as he said she gets very restless sometimes and wants to help all the time. I said I don't want our Mum dosed up with meds just to keep her quiet and said I want to know if they want to change her medication. She went in with no meds at all except a patch that she has changed every day for her Dementia. She lived at home with my widowed sister but also stayed with myself and my other sister in turn every few weeks and was happy and well. The chain however became broken when my middle sister rbecame unwell and needed a hip operation and couldn't cope with caring for Mum between stays with myself and my older sister. Then my older sister felt she couldn't cope with the way things were and that is when it had to be the time to discuss the next step.. Which really none of us wanted but felt I was our only choice.
Now Mum is in a care home that we aren't totally convinced is right for our darling Mum. It's just an awful situation. I live 2.5 hours away from Mum and visit as often as I can. It breaks my heart to see my precious wonderful Mum fading so fast. (she looked so well when she went in). Mum has always been truly special. The most caring loving Mum. We had the most wonderful happy childhood and Mum lost our darling Dad in 1982.After surviving a bomb blast inWW2 our Dad lost both his legs. He met mum after he came home from war and was recovering . He was 12 years older than her but was a friend of Mums brother. They married and went on to have five children. Dad sadly died of cancer and Mum was widowed at 54.She worked as a health care assistant and was much loved by all who knew her. She has always been so caring and never ever put herself first in anything. I feel so lucky that we have her as our Mum. A true diamond. So dearly loved. We cry because we feel guilt and think she deserves far better than she is getting right now. It all seems so wrong.
Thank you for your lovely story of your dear Mum.

It was good to read Faiths mum's story, I am going through a similar story with my beloved husband of 53 years.He has been in a lovely care home with great caring,compassionate staff but unfortunately because of his multiple medical needs he's in hospital at present he has to go into nursing care when he is discharged.So I now have to find a nursing home that can cater to those needs and get him settled in a new environment A doctor who saw him recommended a local home.which I could get to but not sure about the the local council funding all his care. So heartbreaking when he's worked all his life and don't know what will happen now.

Thank you for sharing your story. It illustrates so clearly how person centred care can work .

This is such a lovely story, made me very emotional, as I am thinking of my husband who is in a care home and feel that more should be done to engage the resident. Wishing your mum a healthy life. God bless

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