Advice on reading material

[Fern]

Hello, I was wondering if you could recommend some good reading material on Alzeimer's - I'm looking for practical info on the best way to approach caring for someone with the disease.

My Dad was diagnosed with the disease earlier this year and although I am not the principle carer (that's my Mum) my role is caring for the carer. Dad is just fine at the mo and otherwise very healthy, but Mum is having difficulty dealing with him and I worry about her suffering from depression. She hasn't really come to terms with it yet.

The situation is more difficult as they retired to Greece two years ago (where I live) where there are no social services to help them (although the doctors are very good!)

My husband and I are going to help them build a house next to ours as at the moment my parents are an hour's drive away and I have told Mum that although that's OK now it will be too far away in the future and they must live closer. This is related to the other thing I wanted to ask- can anyone give any advice on practicalities in the house such as layout or anything that is particular to making life easier for the carer and the cared-for. I intend to make their new house accessible in terms of wheelchair use just in case Dad one day ends up in one.

Thank you in advance
Fern

 

[Charlie]

Hi Fern,

The Alzheimers Society have a range of leaflets and books.
I'd recommend Caring for the Person with Dementia - A handbook for families and Carers.

I was sent a list on publications on Joining the Society, but can't find the book on their main site....if you phone 02073060606 you should be able to get a copy (it was about £9). You also get a long list of leaflets that can be order which are really helpful.

Here are a couple of links if you want to see what is available online (but as I say, there are more available if you ask for a list):

http://www.alzheimers.org.uk/Working_with_people_with_dementia/Publications/buyonline.htm
http://www.alzheimers.org.uk/Working_with_people_with_dementia/Publications/index.htm

hope that helps
charlie...

 

[Norman]

Fern
there are often books on Ebay relating to Alzheimer's,just type in Alzheimer's
Good Luck
Norman

 

[Chris]

Hello Fern - what a great opportunity you have ! I was researching on the internet for good care home design once and found sketches of how some sheltered accommodation was adapted for people with dementia.

Before, the units were traditional with separate lounge , dining room and kitchen. The adapted unit had walls knocked down to give an open plan layout - this enables people to see the stairs, the dining area, the kitchen & the lounge. It may lessen agitation when conceptualisation becomes difficult - eg the ability to imagine what is beyond a door - we take this for granted - but it must be incredibly scary not to know what is in the next room when you know it is very familiar (its your own home !) but you cant think what is there. Not knowing where the toilet is in a home you have had for 50 years is hard to imagine.

Also there are details that can help later in the illness - skirtings and door frames can be painted a contrasting colour to help in orientation. Other things can help = as much natural daylight as possible in all areas of house (being in Greece is an advantage over grey old England !!) , having views to 'green' - trees or landscape through windows is therapeutic, having circular walking routes so that if someone just keeps on walking they get back to starting point - indoors & out , level floors especially where the threshold is - often on exterior doors there is a little raised section - good to minimise these as later in illness there is often a change in walking style so a tendency to shuffle and not pick feet up, having a quiet area in the house that can be retreated to is useful - a low stimulation area can be very restful, in the garden - having a walled garden or secure perimeter is said to help people feel safe, but a view beyond to a hill enables a feeling of being connected to the world beyond as well.

Sorry this is a bit of a ramble. Then there is the whole subject of Assistive Technology - building in sensors to alert carer when someone walks past a certain point or gets out of bed. Also lighting can be programmed to come on & off to guide eg to the toilet , if they get out of bed at night.

Best Wishes - will post later if find anything else.

 

[Fern]

Thanks Chris!
This sort of info in really useful! I've just ordered a book from Amazon called "The Complete Guide to Alzheimer's Proofing Your Home". It's an American book so it will probably have some reference and recommendations for suppliers and the like that won't be applicable but it had good reviews and I think it may be what I'm looking for.
My parents are currently living in an apartment in the centre of a very large city, whereas I live in a quiet village so I think the move will be beneficial especially in the future. They will be able to have a garden which will be good for both of them and the house will have views of a small forest, so Dad will definitely be able to see some 'green'.
I have to admit I am feeling a bit overwhelmed at the moment. I haven't finished building my own house (which has been very stressful all on it's own!) and I want to start a family soon. The thought of building another house does not fill me with joy! But what can I do? When you are much younger you never think about having to take care of your parents later on and then suddenly you have all this responsibility on top of your own life's worries. You never think your parents will become dependents this early on. But this is all part of life I suppose!

 

[emscub]

Hi Fern,

Although this book isn't specifically about caring for someone with Alzheimer's, I found it to be brilliant, as it really is aimed at the carer and what the carer should do to look after themselves hence ensuring that they look after the person they're caring for too. It's full of practical advice. The book's called the Selfish Pig's Guide to Caring, and I believe that, upon suggestion, Brucie also found it extremely useful.

I saw it in the shop and the title just leapt out at me, as I so often think myself selfish for my views about our situation.

I hope this helps.