I find myself supporting both the good intentions of the Government’s National Dementia Strategy and sympathising with the doubts of campaigners in the face of extremely limited extra funding. The strategy recognises that the costs of dementia will rise by about £1billion a year for the next 30 years, while only making an extra £150million a year available over the next two years. Without major advances in prevention and treatment it is difficult to see how even today’s patchy standards of care can be maintained.
I know from my own experience the incredibly challenging nature of Alzheimer’s for carers. A close friend has been caring for her mother for two and a half years and I try to help out whenever I can. The slow deterioration of her mother’s memory is sad and difficult but it is something to which you can adjust gradually. Everyone who comes to the house knows about the condition, understands they may not be recognised, that even simple things have to be explained carefully and repeated endlessly. Indeed, as the Government strategy points out, sufferers can enjoy a good quality of life for years (looking back my friend thinks her mother first started showing obvious symptoms about six years ago).
But things get much harder when the mood swings kick in. As the sufferer declines they start to lose insight into their condition, feeling frightened and frustrated. They often get angry, assuming that other people must be responsible for them feeling confused or excluded. It is this that creates a tragic dilemma for many carers.
My great aunt recently moved to a nursing home. She resisted fiercely for years, until she had virtual round the clock care in her tiny flat, but, in the end, after yet another fall at home, she gave in. But Eileen is still mentally alert. I enjoy visiting her and, with the pleasant staff and surroundings, her TV and radio, she is settling into a reasonable, albeit sedentary, quality of life which could last many years.
But for the Alzheimer’s sufferer it is much harder to achieve such a transition. If she is moved to a care home she is very likely to become disorientated, alarmed and even aggressive. This is why patients suffering from dementia are so often put under the so-called ‘chemical cosh’ of powerful sedatives. It’s not - as is sometimes imagined - because the care home staff are uncaring or lazy but that the sufferer is genuinely disturbed and likely, for example, to try to leave the home despite having no idea where to go.
So for carers, often young middle-aged people with their own growing children to think about, the moral dilemma is that even as the caring gets harder and harder (and with few moments now to brighten up the experience) the carer knows their relative will deteriorate much more rapidly once they go into a home.
This is why high quality day and home care is so vital, making the task for the family manageable for as long as possible. But it costs, and the costs keep rising. This isn’t just a problem for Government, or for those immediately affected, it is a challenge for the whole of society.
The chances are there will be someone in your street caring for a dementia sufferer. To have friendly neighbours who are willing to sit with the sufferer for a few minutes while a carer pops out or does something in another part of the house can make a big difference. As well as all the good ideas in the Government plan, and as well as hoping for a medical breakthrough, we must somehow make these kinds of tiny acts of community support the norm - not the exception.
Clare Gage FRSA Rachel Sharpe FRSA
Clare Gage and Rachel Sharpe, RSA Fellowship Councillors for the Central region, introduce themselves and outline what they want to create with Central region Fellows over the next few years.
Rebecca Ford, our Head of Collaboration and Learning Design, is hosting a three-month pilot learning journey to explore how the Living Change Approach can strengthen individual and organisational capacities to effect change. In this blog she explains why and how we are delivering the pilot.