Dementia guide for carers

In the run up to publication of my new book Carers and Caring; the One Stop Guide; how to care for older relatives and friends I am sharing an A to Z of some of the practical solutions learned from research and experience. If you think any problems have been missed you can email me and tell me, and I’ll make sure they are covered in the next edition and online on my website at www.juneandrews.net. 

Dementia

You could write a book about how to care for a person with dementia. In fact, you don’t have to because you can just read Dementia in the One-Stop Guide series. A significant percentage of older carers are looking after a spouse with dementia. It is vital to obtain as much information as possible about the condition so that you can get the help you need to make life easier for yourself and the person that you’re looking after. You will still find yourself being a carer even if they’re admitted to a care home or into hospital, because contact with family is crucial for care that is provided by professional caregivers. Dementia is sometimes also known as Alzheimer’s disease, and the Useful Contacts and Resources chapter in Dementia the One Stop Guide has contact details of organisations which are there to help people affected by the condition, including family and friends.

Dementia is often presented as a ‘memory problem’. Research has shown that for carers of people with dementia, there are at least six other problems that require help which are even more problematic than not being able to remember things. These are aggression, anxiety, sleeplessness, wandering, repeatedly calling out and depression. There is detailed advice on dealing with all these dementia-related challenges in Dementia: The One-Stop Guide. It also explores how to get a diagnosis and what to do in a wide range of situations that occur, such as when the person becomes lost or is in hospital. There are legal problems that can arise with money. What should you do when a person with dementia has no insight and will not agree to get a diagnosis? It can’t be done in a couple of paragraphs here, but there is more on the website at www.juneandrews.net and in the book.

Carers reading this might have seen media coverage of people diagnosed with dementia who are living great public lives - writing books, travelling the world, giving lectures, making TV programmes. There is a lot of noise in the system about whether that is really “dementia” or not. Dementia is not a disease. It’s a set of symptoms including a reduced capacity to take care of yourself, a lack of judgement, sensory and physical impairments, and lost language and thinking abilities. For everyone with dementia the reduction in those capabilities is very slight in the early stages. It’s usually in the later stages that a lot of help is needed. Carers can see clearly when that stage has been reached even if they are too are tired and busy they may not reach out for help. Having met thousands of people with dementia and carers, I’ve met only two people who were still out and about after ten years and had not reached that life limiting stage. I grew very fond of those two in our many encounters over the years, bumping into them on my foreign travels to conferences and organisations. Even with my knowledge and expertise, I cannot say why fewer than one in a thousand people diagnosed with dementia have that sort of journey. We may never know. But for today, this advice is about a more typical journey. Everyone with dementia is different, but there are typical patterns.

Three hints:

1.     Information is power 

2.     Read Dementia: The One-Stop Guide

3.     Dementia carers can get help from organisations listed in Useful Contacts and Resources