Social care in the UK is in crisis and it is especially hard for those with dementia. Unlike most diseases, dementia DOES NOT automatically qualify for Continuing Health Care. Qualifying for NHS care requires complex clinical and tough financial means testing assessment.
Very few qualify - as for the rest, those with means seek private care at £35 per hour or £1500 per week whilst those without means fall between the cracks and are left mainly with their family and partners to care for them. Carers without means are the real sufferers and the hardest hit by this cruellest of all diseases in all its forms. This section focuses on them.
What is a dementia carer?
A dementia carer is anyone who helps with the everyday living needs of someone living with dementia. They might be a partner, relative, friend or neighbour. Often, they have taken up this role over time and believe that they are doing what anyone else in the same situation would do, by being there for their relative or friend. Consequently, there is not always a clear-cut point when someone becomes another person’s carer.
The care they give is usually unpaid, although they may be eligible for certain benefits. Anyone of any age can become a carer and it is not uncommon to find under 16s and young adults in carer roles.
Caring for someone with dementia
Whilst caring for someone can initially be rewarding, there are many mixed emotions among those who take up the dementia carer's role. Many of these carers are either partners or children of the person with dementia, with each of these bringing different skill sets and problems to the dementia caring experience.
Partners are often supporting a loved one with whom they have a long-term relationship and may gain new skills and build closer relationships in the process. However, since these carers will tend to be older (often in their 70s or 80s) they may have their own health issues and, for carers in their 80s, this may include their own dementia. For children or grandchildren in the caring role, the issues revolve around the time required out of a busy working life. This may also include looking after their own children, agreeing a common care approach with siblings plus an element of guilt (‘my parent looked after me when I was young so I must look after them now’).
Whichever category your caring falls into, it creates time and emotional challenges which can be difficult to cope with. At times it may be physically and mentally exhausting and often worsens as the needs of a person with dementia increase over time. People living with dementia often exhibit repetitive behaviour which, despite all attempts by the carer to provide a system that copes with the sufferer’s needs, requires multiple interventions by the carer at the expense of their time and their own mental wellbeing.
Below are some heart wrenching comments from family carers struggling to cope *:
‘We watched our mum disappear.’
‘My Bernard, the one who I used to know, has gone now, which is devastating. He’s only 79, but he can't do anything for himself.’
‘Mary behaves in ways which she had never done before was particularly heart-breaking.’
‘It is devastatingly hard to watch the woman that you love starting to disappear from your life, starting to fade away after 47 years together.’
‘Dad has held my hand with tears falling down his cheeks with a soul-searching look into my eyes but unable to communicate with me.’
Whatever the caring situation, many full-time carers suffer from a toxic mix of physical and mental exhaustion coupled with a feeling of guilt and grief for the virtual loss of a loved one.
They need our help, they need a respite, either on a regular basis or from time to time, so that ‘batteries can be recharged’ and they can enjoy time out with friends and family.
At a time when our beloved NHS is beleaguered and council funding is super stretched, communities have to rise to the challenge and this is where Dementia Carers Respite comes in.
Peter Healy
Charity Trustee & Dementia Family Carer
*Quotes from interview by national Alzheimer’s charities and organisations