Confused about which stage we are at.

[THEHELP]

Hello. Writing this in hope that someone can help me. My husband has vascular dementia, with his scan showing particular damage to the frontal lobe. He was diagnosed when he was 64, but I had been telling nurses etc that there was a problem for at least two years previous to this. He is now 66.
His eating and drinking is very poor..he has already had three stays in hospital due to infections and dehydration. I am now logging every thing he eats and drinks...which is very little. I would estimate that over the last week or so he gets about a pint of fluid (including Ensure)and VERY little food each day. Is this what I should expect this early in the illness?
My worry is that with such a small intake of fluid he will quickly end up back in hospital and I am very aware that each illness seems to accelerate the dementia.
I am new to the forum and would appreciate any views on this. Thank you.

 

[FifiMo]

I would start by making sure there is no physiological reason for him not eating or drinking much. You could ask for a referral to a SALT (speech and linguistics therapist) who can check various things including his swallowing mechanism. They will also give you advice on things to try - they might even refer you onwards to a dietician.

As to the food/drinks themselves...does he have a particular favourite? Is he happier eating sweet things rather than savoury? If his appetite is so poor then nutrition may need to take a back seat in favour of calories, for example. if he prefers sweet stuff then there are things such as custard that can hold a high amount of fluids and it can also be loaded with calories by adding cream to whole fat milk. Rice pudding is another one that can help with fluids as well as calories. Mashed potatoes are usually a favourite especially served with gravy. They too have high fluid content and you can bump up the calories by using whole milk, butter and even an egg. If the mash goes down well then maybe something like a fish pie would be tolerated. As frustrating as it is, it is really just a matter of persisting in offering food and drinks and hoping for an element of luck in finding the odd thing from time to time that the person will tolerate. A couple of other things which may help... tiny portions, little and often, might be best, as being confronted with a large plate of food can be very overwhelming . Some people have reported having success by using a self coloured set of crockery - yellow is the colour which triggers the brain to eat in people who have dementia - might be worth trying. Finally, consider if he is not eating due to his taste-buds having changed and food tasting horrible to him. My mother refused to eat when she was in hospital and her weight plummeted to under 5 stones. We finally worked out that the problem was due to the hospital food not having salt added to it and my mother being of a generation where salt was added before during and after cooking!!! Once we made sure she had a supply of salt as well as a stash of salt and vinegar crisps, her appetite gradually improved again.

I hope you find something that helps soon...

Fiona

 

[BeckyJan]

Hello and welcome to Talking Point.
I agree it would be wise to seek advice from SaLT (Speech and Language Therapist). That specialist is there for speech and eating disorders and they regularly will look at dementia patients. My husband went through several stages of not eating and we found by thickening his drinks, pureeing food and giving frequent ice cream/jellies, he did retain his weight.

The GP should be able to arrange a Therapist to see your husband. I think it is wise to keep the medics informed and also the Mental Health Team/Consultant, assuming he is on their list too.

You may find it helpful to download this factsheet:
http://www.alzheimers.org.uk/site/scripts/download_info.php?fileID=1799

Keep in touch as I am sure you will find much support here.
Best wishes

 

[canary]

Hi I wouldnt worry too much about what "stage" your husband is at. Every dementia journey is different and what problems you get depend on which particular bit of the brain is affected. You just need to deal with the symptoms as they arise - currently eating. I would agree that a referral to a SALT is the way to go.

 

[BR_ANA]

Old post about it. I hope it helps.
http://forum.alzheimers.org.uk/showpost.php?p=968591

 

[Scarlett123]

Welcome to TP, where you will find a lovely friendly group of people, who can give you masses of help and support. Everybody's journey is different, and though one person might display behaviour that could be classed as early stage, they might also do things that would be associated with the later stages.

Good luck with your caring.

 

[THEHELP]

Thank you so much to all who replied to my post re my husband's eating...or lack of eating to be correct. Finding this forum just seems to make such a difference! I think it is just knowing that there are people out there who know EXACTLY what I'm talking about. Managed some trifle and soup today....who knows what could happen tomorrow! He has an appointment with the dietician on Wednesday, but to be honest I think her advice will be the same as given here.
I wish a restful night to all the carers out there.......wishful thinking perhaps, but you never know!