Why dignity matters in dementia care

In middle-age, my dad used to perform a slightly odd but very useful public service: wherever he was, in whatever situation, he picked up litter. He received compliments, odd looks and occasionally – from his teenage daughters – a plea to just stop being so embarrassing.

This was the 90s, when seeing a civic-minded individual with plastic gloves fishing crisp packets out of the gutter was not exactly common. Things reached a head when he collected a dirty pigeon feather and stuck it in his hair; we began to worry a little.

I now suspect that this – and other unusual behaviour – was part of a deepening early-onset dementia that was not officially diagnosed until he was far into its grip. Like so many, we became a family dominated by the quest to care for him in dignity, and only my mum’s heroics as carer, advocate and NHS whisperer made this possible.

Had he been diagnosed earlier, so much would have been different. As we report today on pages 14-15, it is dismayingly hard to get governments interested in prioritising diagnosis and long-term care for dementia and Alzheimer’s.

I get it: there are many competing demands. But for a disease that will claim one in three people born today, and cost the state £90bn by 2040, the lack of foresight is extraordinary.

The Department of Health says it is doubling funding for dementia research by 2025, but the lack of a long-term social care strategy to help people live well in infirmity is glaring.

As my father’s illness advanced, he created wonderful paintings, conducted imaginary orchestras and told absurd jokes. It helped.

Let’s support families better to find the moments of joy as their loved ones fade.