Caring for someone with Alzheimer's/Dementia

[entity]

NHS Choices Alzheimer
See here

Understanding dementia
See here

Your own wellbeing
See here

Dementia Carers Support
http://www.dementiauk.org/what-we-do/uniting-carers/

National Dementia Declaration
See here

National Institute for Health and Clinical Excellence (NICE) guidelines

Supporting people with dementia and their carers in health and social care

http://www.nice.org.uk/nicemedia/live/1 ... /30318.pdf

Update: 13/11/2011 Dignity in Care
http://www.scie.org.uk/publications/gui ... /index.asp

[Zimba]

One of the difficulties is trying to prevent ones loved one from turning day into night or night into day. This can play havoc with normal nights sleep. No doubt I am not alone with this problem. Zimba

[susieq]

No, you're not alone Zimba - it's called 'sundowning' and it's very common Mind you mine can sleep for England - during the day

Have a look at the Alzheimer's Society's website for some ideas.

[LEEUK]

Hi entity, I have a full day course to do this coming Friday on Dementia care which will help me with my job, thanks for the links above, very helpful.

[entity]

For those of you who don’t use twitter and would like to keep up with the latest news on human rights, dementia, disability and so on, this is my favourite blogger.
http://www.equalanddiverse.co.uk/dement ... d-at-home/

[malc]

my wife is not so much sundowning but just scared of going to sleep when it's dark,she has started to see people at night,even though she is not alone in bed my daughters and i take turns,we don't get a good sleep because of tossing and turning and the fact she is also up and down all night and the kids help because they know if i don't get the odd good nights sleep we're all in a mess if i go under because i can't work part time and lose working tax credit,has anybody got any ideas on calming her down at bedtime,i hate alzheimers!

[entity]

Malc,
Mum went through this stage and it was terrible to watch so my advice is to contact the CPN or Doctor to get proper medical advice . Your wife may well be suffering from visual hallucinations due to the progression of dementia.
"Visual hallucinations can be simple or complex, and can be as diverse as seeing light flashes, patterns, people, animals, distorted faces, objects, complicated landscapes or bizarre situations."

There is also the possibility of a water infections which left untreated could lead to psychosis.

For more information
http://alzheimers.org.uk/site/scripts/d ... mentID=172

[malc]

thanks entity,i don't think it's a water infection because of lack of accidents,i have left a message for our care coordinator to ring me and i'm hoping she will speak to the consultant about it for us,the gp probably wouldn't know how to help,so i thought it would be best to go to the main man.have you got any tips on how to deal with this because it's bad enough she has got alzheimers at 41 and my heart breaks for her,like i said to adult social care yesterday i often think she would be better off not on aricept so she could be in her own world drifting away where nothing can hurt her

[susieq]

Malc, does your wife take her Aricept at bedtime ??

The reason I ask is that sleep disturbances/hallucinations are well known side effects of Aricept - when Mum first started on it she had terrible nightmares, then I read online (a Canadian Study) that if this was a problem the drug could be taken in the morning instead. I checked with her geriatric pyschiatrist and he was happy for her to switch the time of day - she now takes it in the morning. Mum still sundowns regularly usually from mid-afternoon onwards (she gets more confused and agitated/argumentative) but no more bad nights.

It might also be worthwhile for you to check with her Doctor if one of the other dementia drugs might be more suitable for early onset dementia (Reminyl, Exelon or Ebixa).

On a practical note - have you tried a night light in the bedroom, so that if she wakes she can see where she is and gain comfort from familiar surroundings ?

[Lazydaisy]

before I say anything, I have never cared for a relative with Alzheimers, this is just a suggestion.
Have you tried lavender essential oil on your wife's pillow?Put it on a cotton wool ball just inside the pillowcase. It usually relaxes the mind. (I have heard of people with Alzheimers having aromatherapy, so I don't think it would harm,but like I say, I have never had to care for a loved one with this condition.)
I hope that you manage to find something that will help you wife to settle.

[malc]

thanks for the replies,she takes her aricept in the morning and the kitchen light is left on so she can see the light through the gap in the sliding door of the bedroom(ground floor extension),i thought i'd covered all bases that's what is so upsetting about it,lavender oil worth a try,to be fair i'd try hanging a picture of mickey mouse on the wall if i thought it would help.

[entity]

Malc,
Is the coordinator a continuing healthcare nurse trained in mental healthcare? If this is not the case then I would suggest you request a contact number for a specialist mental health nurse, because your wife is entitled to continuous assessments according to NICE guidance, (and she doesn’t have to be in a care home) to receive these standards.

http://www.nice.org.uk/media/7EF/3F/Dem ... andard.pdf

You could contact “Admiral Nursing DIRECT specialist dementia nurses offering support. They are always posting on facebook and offer regular chats online.

“Admiral Nursing DIRECT is open now until 8.45pm. If you have any questions or concerns about dementia please call 0845 257 9406 and speak to an Admiral Nurse. direct@dementiauk.org “

Tips - lots of hugs and reassurance worked for a while but, if the person is in the late stages there is very little one can do, other than seek medical help for easing brain disturbances.

PS, a person with dementia, doesn't have to be incontinent to get urinary tract Infections - Carers should keep an eye on the water works regularly to check; colour, smell, quantity leaving the body otherwise kidney damage could occur and this often leads to dehydration.
I also agree with the above a well lit room and lavender does work well in the early stages to help calm the mind.

[malc]

i'm sure the care coordinator is trained in mental healthcare,she's good,as much my shoulder to cry on as the wife's,not sure how i'm supposed to check for urine infection discreetly short of sitting in the loo with wife which aint going to happen,i just think it's part of the alzheimers because we're also getting to the point where if she had her way she would never go out because she feels safe in home,my dad was like this when he got alzheimers and if i remember correctly it was about 2 months after he took a turn for the worse and ended up in a nursing home.we've had the tears when she sat in the car at shopping and was scared to go in the supermarket,we're off christmas shopping with eldest tomorrow ,i just hope she will come without to much discussion

[brogusblue]

This is the first post down this end of the forum ..

Some of you will have read my posts about the problems i was having my mum and trying to get help.. My mum was told that she has vascular dementia yesterday and they are looking to emergency respite care by next week to give me a break.. then they are looking to get funding from the nhs to fund my mums care and then put her in a home where she can get the care she needs.. I have been caring for my mum nearly 21 years now and now its starting to get too much for me so hopefully they can sort it..

[entity]

Eating!

Dementia can greatly affect a person's relationship to food and eating. The behavioural, emotional and physical changes that take place as dementia progresses can all have an impact upon a person's eating habits and on their intake of food and drink.

http://www.alzheimers.org.uk/site/scrip ... yID=200367