A report on Friday suggested that dementia might not be the epidemic we had been led to believe, showing that there were 22% fewer people aged over 65 with dementia in 2011 than had been predicted in 1990. But even one case of this devastating illness is one too many.
My mum was diagnosed with early onset Alzheimer’s disease, which affects about 14,000 people aged under 65 in the UK, three years ago. At the time, my dad said she “would not be what she was”, and he wasn’t wrong. My mum was an inspirational woman who worked harder than anyone I have ever met, ran the family home like a military operation, and was active, healthy and successful. I always imagined this kind, loving woman would be around for ever. But what was once second nature to her is now a daily struggle.
I liken Alzheimer’s disease to a burglar who keeps coming back, no matter how many security systems you put in place, taking more and more until there is nothing left. It is a uniquely cruel disease that dismantles personalities and strips away the ability to perform basic tasks, such as washing and getting dressed, while triggering deeply upsetting behaviours.
My mum did everything right in her life. Now she is being catastrophically let down by those who should be helping her
My mum did nothing to bring on her Alzheimer’s, but there is no way to prevent it. That is what makes dementia so terrifying: it can happen to any of us. When my mum was diagnosed, we were unprepared. We should have been told what to expect and when to expect it. My mum was given sage dietary advice, and told to do crosswords and take exercise, but not helped to plan for what would happen when the disease took hold.
Her deterioration was so rapid that it completely overwhelmed us. Doctors, when you can access them, only provide more tablets, one of which made my mum extremely aggressive. Everything we have done since has been reactive, such as obtaining power of attorney: an unnecessarily complicated and costly means of managing her finances in order to care for her properly. Individuals with dementia and their families are essentially cast adrift, and the only sources of useful information are underfunded, over-stretched charities.
Many of these, such as the Alzheimer’s Society, have done amazing work to educate the public about dementia, but where they succeed, institutions fail. There are 850,000 people in the UK with dementia, but the support available ranges from the comic to the tragic. David Cameron has promised £300m for dementia research, but since he took office, the care and assistance provided at a local level has been swept away by councils needing to cut costs. People with more than £23,500 in assets or savings have to pay for their own care, which can cost as much as £50,000 a year for a residential home. By postponing the £72,000 cap on lifetime care costs it promised, the Conservative party has condemned thousands of people to continue losing savings built up over a lifetime, and some to have to sell their homes to fund care.
This means the fairest and most sensible option is caring for loved ones at home. Despite my mum’s deterioration, we are determined to do this, but it places enormous demands on us all. My dad just about manages to work part-time while my sister and I try to fill in the gaps. With the help of carers costing upwards of £15 an hour, we provide 24-hour care. Given her propensity to seizures and confusion, coupled with a tendency to wander off, this patchwork system is essential for my mum’s safety.
Figures show that one in four hospital beds is occupied by someone with dementia. By putting councils in a position where they cannot provide genuine respite care or day care services, the government is driving thousands of people with Alzheimer’s into hospitals. Having spent several nights in hospital with my mum, because there was nowhere else to go, I know how distressing it was for her. She was tested for every possible illness over eight hours, only to be told she was physically fine. Even specialists do not always understand the condition. One told us that we should keep my mum on one floor of the house to prevent falls, when any carer knows that younger people with the disease are prone to constantly walking around.
Respite care is expensive, extremely difficult to arrange and, even if you find a place, the standard of care your loved one receives varies wildly. Some of the respite homes we were allocated had been rated inadequate by the Care Quality Commission, but desperate people have no choice. And respite is just a short break from what feels like a never-ending nightmare. I spend many of my non-working hours looking after my mum, and it is a lonely and isolating existence. I feel alienated and detached from other 25-year-olds. My tiredness comes not from too many nights out, but being awoken at 4.30am by someone with no awareness of what time it is. Not only am I grieving for a parent far earlier than anyone should, but I am trapped in a world that few people my age can comprehend.
My mum did everything right in her life. Now she is being catastrophically let down by those who should be helping her. While the care and support available remains so inadequate, Alzheimer’s disease will continue to inflict unnecessary suffering both on those living with the disease, and their families. If and when we can no longer look after my mum, I want her to be cared for by attentive, experienced staff members who have the time to do their job properly and are paid fairly. Too many care homes are poorly staffed, overburdened and lack a sense of dignity. This country owes my mum and the thousands like her so much more.
Originally published on The Guardian on August 25 2015.