Around 700,000 family members currently provide care for people with dementia in the UK, so if you’re recently started caring for a person you love you’ve joined a very large workforce. Trouble is, it’s a fairly anti-social job with very long hours. Whilst thousands of carers might be struggling with exactly the same issues as you, you could sometimes feel as if you’re the only one.
Here’s what to expect on the caring journey.
Alongside all the conflicting emotions you could experience, including guilt, anger, sadness, frustration and loneliness, are several important practical considerations.
* Your finances will be stretched, and if you get paid at all it won’t be very much. The Carers Allowance is currently £64.60 per week. You might have to deal with the benefits maze (be ready to fill in lots of forms) and communicate with a whole range of professionals who may or may not be able to help.
* You’ll need to become an expert in dementia – or at least in the type of dementia your loved one is living with. For example, you’ll learn quickly that people with frontotemporal dementia can behave quite differently to those with Alzheimer’s.
* You’ll need to prepare for the effect all this could have on your own physical and mental health. Some family carers aren’t in the best of health themselves, particularly if they’re elderly and are dealing with medical conditions such as arthritis, high blood pressure or heart disease.
4 facts about dementia carers
1 – Family carers account for £11.6billion of the economic cost of dementia
2 – Family carers spend 1.3 billion hours a year providing care
3 – 83 per cent say it’s had a negative impact on their physical health
4 – 39 per cent have put off medical treatment because of caring
Sources: Alzheimer’s Society UK and survey In Sickness and in Health
How caring can affect your mental health
Carers often underestimate the emotional impact of what they do. In fact, carers of people with dementia are more likely to experience stress and depression than those who are caring for people with other conditions
Did you know?
1 – 90 per cent of family carers experience stress or anxiety several times a week
2 – 40 per cent develop clinical depression
3 – 80 per cent find it difficult to talk about the emotional impact
Source: Alzheimer’s Society
So why do people like you continue to take on such a demanding job?
There are all kinds of reasons why you may have found yourself caring for someone with dementia. Of course, love and affection are often the driving motivation, but they’re not the only ones.
Could this be YOU?
* You had no choice – paying someone else to do the caring was simply out of the question.
* You think you’re the best person for the job, though you’re already worried you might have taken on too much
* You feel it’s your duty. Besides, everyone else expected you to take on the role of carer, and you didn’t know how to refuse.
Maybe you never expected to become a carer. If you’re caring for a partner with early on-set dementia, for example, it might be quite a shock to find yourself in this position. If you’re a sandwich carer with young children to look after as well, you might feel overwhelmed. But whatever your personal circumstances, it’s worth remembering that all family carers will probably experience the same doubts and fears at some point on the dementia journey.
3 more important facts
* You’re doing something worthwhile – even on bad days when you feel as if you’re the worst carer in the world, always remember that the stuff you do is helping to make life a bit easier for someone you care about (even if they don’t always appreciate it).
* You’re doing the best you can– you may struggle with some tasks more than others, and find some things almost impossible to deal with, but guess what? So does everyone else – that’s just how it is.
* You may surprise yourself – many people who have cared for loved ones look back on what they did and wonder, ‘did I really do that?’ When they reflect on all they did, the life skills they learnt and the effort they made to help the person with dementia they feel a renewed sense of confidence and pride… and rightly so.