Cancer and Dementia care.

Dementia Devolution

Caring for people with Cancer compared to people with Dementia

I am a Manchester SHA member who worked in the NHS as a clinical scientist, and my wife Teresa was a nurse. Teresa consulted a doctor in 2012 to discuss memory problems that we had both noticed some time before.
She had had problems with orientation, for example struggling to find where she had parked and there were time when I had to talk her through finding her way again when she missed the right turning on the motorway.
Two years later, in October 2014, Teresa was diagnosed with dementia. My reflections on that time are, “We’d been given some life-changing information, but nobody followed it up while we were waiting for further investigations”. Finally the following summer, in 2015, she was told she had Alzheimer’s Disease (the most common form of dementia in the UK) and medication was prescribed.

Around this time, I retired from work. Then I was diagnosed with bowel cancer, and discovered the dramatic difference in treatment and care for people with cancer and people with dementia.
When I received that diagnosis “a whole system clicked into place”. Appointments were arranged immediately “with seamless coordination between different parts of the NHS.” There was a specialist nurse who said “here’s a card – ring us if you have any
questions” and “this is what is going to happen now.”

In Teresa’s case everything we needed had to arranged by seeing the GP. We didn’t feel we were in a system of care. We did find support through a local charity, Together Dementia Support, which helps people living with dementia to continue to enjoy life and Teresa became a founder member of their Fabulous Forgetful Friends, which challenges stereotypes (she ran the Manchester 10k in 2017) and also had the aim of being an influencing group.
We did continue to enjoy life. We went walking on Skye and Ireland, but I realised that going out into the mountains, “I was effectively on my own now.” We still travelled as much as we could, mainly in the UK, but we also had a memorable trip to Norway to see the Northern Lights.

As the disease progressed, our grandchildren – even as young as three – knew they needed to look out for their grandma. “Grandad, Grandma’s gone outside,” they might shout, or “Look, Grandma’s taking the lid off the pan.” Eventually Teresa began to need more help getting showered and dressed, so I employed an agency to provide care services for about an hour every morning. Through Social Services I did get a device installed that would alert me when Teresa got out of bed, but only after I had asked if there
was any simple technology to assist me. Nobody said ‘what problems are you having’, or ‘this might be useful’……Why did I have to ask the question?
The problem with dementia, I have come to understand, is that it does not fit neatly into a medical model of care. It involves both health and social care, as well as services provided by Voluntary, Community and Social Enterprise (VCSE) organisations. And neither the NHS nor Local Councils “own” the responsibility, meaning that patients fall between the cracks. In contrast, when I had cancer, appointments were arranged with “seamless” coordination between different parts of the NHS.

Teresa’s symptoms gradually worsened, and the situation for our family became more challenging. We came to the decision that it would be better for Teresa to live in a care home, where the staff could provide the attention she needed, and I and the family could
visit regularly and spend more quality time with her. She moved into a care home in 2020, two days before the national lockdown due to the Covid pandemic. And then Teresa died, aged 71, just 10 days later.
I recall the terrible time of arranging a funeral given the restrictions that were put in place during the pandemic, with only our children, and no partners, grandchildren, close family, or friends allowed.

I would sum up my experiences by saying the care I received from the NHS while I had cancer – with two surgical operations and chemotherapy in between – was incomparable to our experience of dementia care.
I am now chair of the Trustees of Together Dementia Support, the Manchester and Trafford based charity which helps people with dementia live positively and which supports carers. It is estimated that there are about 5,000 people across Manchester currently living with dementia. Supports is provided to around 300 carers every week. In April, carers and former carers associated with the charity met in Alexandra Park, Manchester, to share memories of their loved ones.

It was an emotional event. But there was, for some, still a sense of frustration. As an activist with the Labour Party and the SHA, I wanted to use my experiences to do something to improve the situation for others. I was invited to Manchester City Council’s Health
Scrutiny Committee in March, and told them about our experiences, concluding that there needs to be a proper system of care for people given a diagnosis of dementia. This would need to incorporate primary and secondary care, social services and charities and include carers, who become “experts by experience”.

I am pleased that, at last, progress is being made in Manchester, where a recently published report recognises some of the changes that are needed. It builds on the work already underway with Greater Manchester Integrated Care Dementia United Programme.
This was first established in 2016 to build on the opportunities offered by the devolution settlement for Greater Manchester to improve the care of people living with dementia and their carers.

The Mayor is very supportive of this work. We know “what good would look like” and there is now political will within Greater Manchester, but finding the resources that are required for the changes which are needed will be a challenge for the health services
and Local Authorities.

Jeff Seneviratne