Alzheimer Scotland’s Fair Dementia Care campaign tackles inequities that people with advanced dementia are facing every single day. People like Frances Nixon, who was diagnosed with young onset dementia and had to move to a care home in March 2020. Frances’ husband Jim has shared their experience below.

I met Frances in 1982 when we were at university. She was beautiful, smart, sociable and had an absolutely wicked sense of humour. We married in 1986 and had two children who are now 26 and 23 – our pride and joy. Frances spent most of her working career in financial services and held senior positions before she accepted redundancy in 2009. She was so clever; and we were all so proud of her when she undertook an MBA which she achieved with distinction in 2010. Frances started to notice a decline in her concentration and memory initially, which progressed after her MBA. She was applying for jobs and being invited to interview, and she noticed she was struggling to think of examples in answer to the interview questions. Frances accepted some senior level contracting work but eventually realised that she was just not able to continue with the positions anymore.

It was so tough seeing my wife, the person I’d been with for over 30 years, start to change. It was gradual – starting with losing her confidence and wasn’t the commanding figure she had once been. Frances made the tough, but right, decision to look at jobs which she felt would be easier for her and she got a job in the clothing department of a highstreet store. Initially she found this relatively ok however it became an increasing challenge. She was struggling to remember details; if customers asked her a question, she would need to write it down and then eventually she was finding it hard to recall the question even before she wrote it down. We knew then that it was time for her to retire.

By this point, we were both aware that there was something wrong but it was really difficult to get a diagnosis, mainly because of Frances’s age. When she eventually received her Alzheimer’s diagnosis, she was just 53. As I’ve heard is quite common, Frances’s symptoms were put down to many things: depression, anxiety, menopause – everything except dementia. Whilst receiving this diagnosis was devastating, we used the label as the opportunity to get access to support and we both benefited vastly from Alzheimer Scotland’s Edinburgh Services – both the Day Care and the one-to-one support. We also used the time we had to make more memories; we went on incredible holidays to Italy and travelled to see Frances’s family down south. She was such a sociable person and the diagnosis didn’t change that – we went to dementia-friendly art galleries and museums, we loved walking and went on hotel breaks which we both enjoyed so much.

As time progressed, we were beginning to struggle a bit more. I am a Modern Studies teacher and initially I was able to reduce my hours, however it got to a point where I had to retire to become Frances’s full-time carer. For the first 6-9 months, this was ok – we remained sociable. I’m so glad that I have these memories to look back on, they were such treasured times. However, Frances’s dementia progressed and I really began to struggle. There was a lack of respite for carers, which is common when the person who has dementia is younger. In December 2019, Frances got a space in an Assessment Unit. This was initially for a period of 6 weeks, which I used to look at our options. As a family, we knew Frances would have to go into residential care which is one of the toughest decisions we will ever have to make. The full process of finding a suitable care home, knowing what our rights were and undergoing a financial assessment was so complex and you find yourself navigating this really difficult path whilst having to accept the circumstances you find yourself in. Frances’s age also made the process much harder; most care homes won’t accept you unless you’re over 65 which just shows how dementia is still treated as an older person’s illness and how there is a complete lack of understanding about the scale and complexities of the condition. The whole process was unnecessarily stressful - you find yourself asking questions and asking for help from people who should know the answers but don’t. Eventually I found Frances a care home close to where we stayed, and she moved in on Wednesday 11 March 2020 – two days before the care home shut down due to the pandemic. Having gone through the financial assessment, Frances’s contribution was set at £840 a month. I cannot fault the staff at all, they were fantastic, however I still find it incredibly unfair that people with advanced dementia are subject to these charging policies.

We were both involved in the initial Alzheimer Scotland Fair Dementia Care campaign. Frances had a strong justice/injustice line. She didn’t like people being treated unfairly – whether that was on tv, in work or at home. My sister had died in February 2019 of cancer and there are such distinctive differences in the way these two conditions are treated. There was no question of money; whether my sister could afford her care and nobody had to agonise over care homes for her. At that point, Frances and I felt it so unfair that we were having to make provisions for her eventually going to a care home. We had no idea how long Frances had, what the costs of a care home would be, or whether she would get a space in a place that would be right for her. At a time where the focus should be creating memories and doing the best with the time you have left, the last thing you should do is have to worry about financial implications. My mum would say it was like Britain in the 1930s when people wouldn’t go to the doctor for fear of affording it.

Frances died in December last year aged 57. After she went into the care home in March, I didn’t get to see her again until July. There’s no doubt in my mind that the pandemic sped up the progression of her dementia, however we were lucky in a sense that we could make use of the garden visits and then latterly, some indoor visits before the care home went back into lockdown. The staff in the care home really did their very best, but they weren’t Frances’s family. They didn’t know her like we did, no matter how much they tried. We were the ones who knew her wishes, her likes and her dislikes. We also knew which names, stories, songs etc would generate a smile or a remark from Frances; smiles and remarks that were so special to us as a family.

If Frances had gone to a night out and there were only 20 people there, it was a quiet night. For her to have only 20 people at funeral was difficult, however our family have been overwhelmed at the outpouring of love shown. We knew it anyway, but it was so clear just how well thought-of she was. Colleagues from years ago got in touch and came along to the funeral – I’m so proud of my wife for being the supremely intelligent, witty, outgoing and kind person she was. The kids and I miss her every day but count our lucky stars that she was ours. We are determined to do right by Frances and hope that by sharing our story, people will see just how unfairly people with advanced dementia are treated. We owe her that.

Thank you to Jim for sharing such a poignant reflection of his relationship to Frances, and their experience of paying for care. If you would like to share your experience and help make a difference to our campaign, please email [email protected]