There are around 550,000 dementia carers in the UK. And it is estimated that 1 in 3 people will care for someone with dementia in their lifetime.
Dementia carers are the single most important player in the dementia world. They are the unsung heroes within our health system. They play a crucial role in looking after those with dementia, often without recognition and in many cases reward.
This Sunday is National Dementia Carers day. We want to use this event to recognise, celebrate and praise the invaluable job that Carers do – a role that is often picked up by default, not exception.
Susan, 58, moved her mum in with her five years ago when she started to get forgetful. She has now given up her job and is now a full time Carer. Her story below demonstrates the benefits and breadth of dementia carers.
‘Rita, my mother, has been with us for 5 years. She came to live with me, my husband and children as she had become too confused and vulnerable to be left alone so far away. At the time I thought Rita was just getting old – I knew nothing about dementia. That diagnosis (Alzheimer’s plus Vascular Dementia) came a year or so later.
Rita’s dementia is now severe. She has very little short-term memory. Her behaviour is unpredictable and disinhibited but she is nevertheless extremely spirited. She is thrilled by both using and hearing really bad language. She is incontinent and has reduced mobility. However, she does enjoy her food and, having regressed to being a young woman in the prime of life, she has an over-riding desire to find a mate and is not shy in going about it.
At around 7am something wonderful happens here - thirty minutes of help with Rita’s personal care. This is quite new in our daily routine and it makes a huge difference to us both. Rita, who is wholly unpredictable, seems to quite enjoy it. “Are you a virgin?” she asked one attractive, 50-ish, care worker upon arrival. “What if I have an organ (sic)?” she said the next day to another who was working below the waist. The questions come thick and fast.
The care workers are all marvellous - each one so kind and somehow able to take the rough with the smooth in every changing second. It is great to learn new tricks. Having this help changes my day immeasurably, on levels both practical and human.
In caring for Rita in our family home, as opposed to somewhere adapted for the elderly, I find I need to be constantly problem-solving the physical practicalities of the moment, and forward thinking for whatever circumstances the future might throw at us. It is difficult to know what help might be available at each step of the way.
When she’s mobile, I take Rita to the local Memory Group for people with short term memory problems. Initially I was hesitant to go. In the past when Rita has attended events for the elderly I would be asked not to bring her again. “She just doesn’t fit in”. “Our volunteers shouldn’t have to put up with language like that”. Thankfully, it turned out that this group is very inclusive and even though Rita can be volatile she is cherished and accepted. It is novel and most enjoyable to be able to go somewhere together and feel welcome.
Caring for someone with dementia can quickly lead to real isolation. The ability to have polite everyday conversations in the outside world starts to decline – especially when the language at home is so full of expletives. The loss of freedom can make one feel apart from society and opportunities to venture out on the spur of the moment cease altogether. Add to that the over-riding physical and emotional tiredness and a general loss of confidence can easily result.
I am lucky. Eighteen months ago the local GP surgery gently made me aware that I am a Carer and not just a daughter who has chosen to look after her elderly mother. I was given a carer’s health-check and put in touch with the Wiltshire carers’ charity. Life now feels quite different. I attend monthly educational sessions at the local branch of The Alzheimer’s Society. These are a lifeline to me. The ongoing information and carer support means I feel prepared for and undaunted by the future… however it unfolds.
For me there have been some hidden benefits to being an unpaid carer. It is a very simple existence, which I favour. In line with Rita’s volatility, I have had to learn to live not just day to day, but minute to minute. No doubt this is beneficial. I have come to relish the fact that each day is unpredictable.
There are, of course, times when it all feels pretty grim and I just yearn for some silence so that I can think straight … but the regular moments of light relief when Rita’s great spirit shines through ensure that I never stop being glad that she is with us.’
A recent report by the Alzheimer’s Society indicates that less than half of carers receive support in their caring role. It is the Prime Minister's goal to ensure that, by 2020, carers of people with dementia are made aware of and offered the opportunity for respite, education, training, and emotional and psychological support so that they feel able to cope with their caring responsibilities and have a life alongside it.
We are currently exploring work with key stakeholders to help tackle the social isolation, loneliness and depression experienced by many carers.
Susan is an exemplar of the humanity, care and compassion the dementia carer embodies. We all owe them a deep debt for all they do.