The carers in our midst
According to Alzheimer's Research, over a third of the UK population (38%) know a family member or close friend living with dementia. It's not surprising when you consider there are around 850,000 people currently living with the illness.
What's more, people with Alzheimer's are frequently supported by informal carers - 700,000 of them. Thirty-nine percent of the carers are estimated to spend more than 100 hours per week in this role. Sixty-one per cent say they have had no or not enough support.
Many 'hidden carers' are also in employment, and in an enlightening article in the Financial Times, three suggestions are made about how employers can support their staff.
One is to sponsor carer networks to share advice and a sounding board.
The second is to fund employee assistance programmes to provide a port of call for support and knowledge.
And the third is to publicise carers' stories to help people realise they are supported and not alone.
In the spirit of the third, Martha How, a principal at Aon Employee Benefits, shares her story:
"In the last ten year's of my mother's life, my world revolved around her. I was never her 'carer' as such as she didn't live with me, but I speak from the heart on the impact this had on my life and work.
Even though I had support from my sisters, the impact of being responsible was huge on me personally. The emotional toll it takes on families is real and never lets up. As three sisters we all had different lives, work, children, husbands and, like many siblings, moments between us which were less than harmonious.
When my father died from liver cancer in 2005, he asked me to look after my mother and her money. She continued to live at her home for 3 years, 90 miles away from me, so I looked after dealing with a home care agency, doctors and paying her bills as joint signatory on her bank account.
It was when she lost the use of her legs and had a series of chest and urinary infections and was showing early signs of dementia that she became incapable of living at home. I remember the stress and sadness my sisters and I felt when convincing her to move into a care home, and I remember trying to find a decent one – it took two attempts before we found one where she stayed for the remainder of her time.
She was broadly stable in that home, but her dementia developed. I continued to handle all money matters, as well as ensuring she had as many visits as possible, taking her on day trips as well as fielding sometimes 10 phone calls a day from her.
Was my work impacted? Yes, in terms of my stress levels, but I chose to deal with my mother's last few years without actively seeking support from my employers. I'm a bit old fashioned and prefer to keep domestic and work life separate.
However, it was a relief when the opportunity to reduce my working hours came about. It meant in the last few months of my mother's life, I used non-working days and extra days' leave to be with her. I was open about this with the team at work, and colleagues and the company were very good about it, not least providing sympathetic leave at her end.
I'm still grateful for the flexibility in my role, especially part-homeworking and reduced hours, so I could give mum the time and support she needed
I simply do not think people plan enough for this sort of thing or talk about it enough. It is very challenging to have to research and understand things like lasting powers of attorney, "do not resuscitate" consent, different types of medication and the help (or not!) from local authorities when it's your own mother suffering. Authoritative information would have made a real difference to me, and if this were available from some kind of "caring network" this would have helped.
To me, it is a huge issue. People sometimes ask me why I didn't push for more senior leadership, and I think I unconsciously cut back on my ambitions due to it. I don't regret or resent this, but maybe it's one of the last work taboos and a social issue, trying to be a good daughter or son in a world in which nuclear families no longer exist and everyone works.
Yes, employers must support their employees, but essentially, as a society, we need to get to grips with it."
National Dementia Carers' Day has been founded by a coalition of partners including Dementia UK, Alzheimer's Society and SweetTree Home Care Services. Each of the foundering organisations are dedicated to improving quality of life for people living with dementia and the quality of life of those caring for a loved one living with the condition. The founders are aligned in the overall aim of raising awareness of and supporting the role of informal dementia carers.