To worry about my DH getting early onset Alzheimer's?

[CatWomantotheRescue]

My DH's mother has Alzheimer's. She was diagnosed at 55 and now, ten years later, can barely speak, doesn't know what's going on around her, etc.

My husband is 48. We know he has inherited the gene for Alzheimer's as we have had private genetic testing (but no counselling). We don't know when he's likely to get it but we can only hope it will be later than his mother, as his mother was an alcoholic and didn't look after herself.

However, let's assume he gets it at 55 and shortly thereafter will require a carer. I don't want to and can't be a full time carer. When my husband is 55, I'll still have over 15 years until I'm due to retire. I love my job and earn good money. Probably not enough to pay for his full time care, but good (£65k at the moment).

So AIBU to ask for advice and tips on what to do now to prepare? We are making overpayments on the mortgage and are hoping to have it paid off by then. What else should we be doing financially and health/lifestyle-wise now to prepare?

Of course, it may never happen. But it's scary thinking it might. This morning my husband mentioned that he couldn't remember what he had for dinner the night before last, and while that's probably normal from time to time it got me a bit worried. It couldn't be starting already, could it??

What an awful place to be.

I think you need some specialist help. I'd contact your GP and/or the Alzheimers Society.

Thanks, magi media I will give the Alzheimer's society a ring. If anyone has any personal stories, anecdotes or advice please share those also?

I would try not to panic or overthink it (easier said than done I know).

After reading your op, I've just had a think...it took me a good 20 seconds to remember what I had for dinner last night. Monday night...the kids ate at the childminders, me and dh...nope, can't remember. Maybe it will come to me (maybe we didn't eat? )

Point being, I think not remembering some details like past meals is quite normal...I'm 28 with no known memory problems.

So sorry your DH is facing this. Yes definitely the Altzheimer's society. Whether it happens or not, you both will need support to help you move on from this test and live your lives in a normal way (having done all preparation for the worst, by all means).

Will PM you my (second hand) anecdote/story ... PM it simply because what worked for one, may well not work for hundreds of others, and I am wary of putting a tale of hope on a public forum, when the method is unsubstantiated, but ... at the same time ... do think everything is worth hearing about.

My mum is 60 and has had dementia for three years now. The main thing I wish they had done if they'd had warning is moved house. Now three years in it would confuse her and upset her way too much to be living somewhere she hasn't always lived; at her carers group all the couples who moved to make life easier after diagnosis are now dealing with wandering issues and the pwd constantly convinced they are on holiday or in a hotel (for example, refusing meals because they think they can't afford hotel prices).

I know one lady who has had a very early diagnosis and is moving now while she can still make the choices herself. She is in control, and is planning what is most helpful in a home. Hopefully it will be suitable for a long time as it's been planned, and she will be familiar with it by the time the dementia becomes a real issue. It's also a property she'll be able to cope with later on, and she's starting with a cleaner now so that person won't be unfamiliar to her when she gets worse - my parents house is a mess, totally unsuitable and mum won't allow strangers in now to help. If it were me I'd give serious consideration to moving.

Yes, its probably worth while thinking about the house you are living in and would it be suitable for caring/living in assisted. That could be for lots of eventualities as you get older (both of you).

With my mum the guilt was the hardest - vascular dementia. She'd always said she didn't want to go into a home (ex nurse) but there was no way she could cope at home on her own. We felt so much guilt about putting her in a home (a lovely place that we spent ages looking for where there was specialised help and care) but maybe if we could have had the conversation first that would have lessened the guilt factor.

My husband knows that if I go the same way, he's to feel no guilt about leaving me well cared for and moving on.

My experience of dementia (including alzheimers) is that it isn't the not remembering that stood out to me as the first things we noticed-I had to think hard about what we'd eaten for dinner two days ago, but it's the thinking you remember and it being a total fabrication.
So if your dh had said that two days ago he'd gone to the fish and chip shop to get dinner and found it was closed so he'd driven to the next town and they'd run out of mushy peas... when you'd really had a Sunday roast, that would be more worrying.

For my gran the first sign was her phoning df up and swearing blind that he'd said we were arriving for Christmas that day-it was the 12th of December.
She used to tell df how she'd gone to catch the number 67 bus to town and bought fish fingers and had four because she was so hungry, and she was going to have to go again tomorrow because she'd run out of bread.
He'd get off the phone and dm would say but the number 67 bus stopped calling 3 years ago, and she would never eat more than two fishfinger (very small appetite) and why would she need to go to town to get bread when there were three shops that sold it in the village.
Then the more wild fantasies came-the lady opposite her was off Coronation Street and had run away because she was having an affair with the director and he had come to knock on the door of all the neighbours and none of them liked to tell him she now had another man living there. (said lady had lived there for 20+ years and was living with her husband and had done all that time). And then we had the man from the shop who was definitely a spy!

If I compare a little thing:
My granny had a series of mini strokes (although we didn't know it at the time, we just thought her memory was failing). She needed to write a cheque, and couldn't remember the date. So she looked behind her at the calendar and got the month and a reasonable guess on the date. She couldn't remember the year, so she looked back at the previous cheque and used the same year-which happened to be the previous year.
But she knew she didn't know and took very sensible steps to try and find out.

Dgran, who had alzheimers, knew exactly what year it was-it was "1948 and thank you for not correcting me, I know perfectly well what year it is!"
Any attempts to correct her went down badly. When she went to live in a home (which incidently she did love despite all df misgivings about it) she also knew exactly where she lived... unfortunately it was about 3 previous addresses-but df was convinced if she got out of the home she'd go back there and probably call the police on the poor innocent people living there-and very convincing she'd have sounded too.

In the home (which was a home for people with alzheimers) there are two residents that I remember. One , the first time we visited suddenly got up, fetched her coat and hat and said "Go and tell Will it's time to go, I'm ready to go now," eventually I ran to fetch a member of staff, who said she did that every night, Will was her dead husband, so they'd say to her, "come and wait for him in here" and she'd go with them to her room, and then would decide she was in a hotel and was going to bed and he'd come up (from the bar) later. Quite happy she was.

The other chap must have been pushing 80. He came into the room, admired some of my grands flowers and told how he goes down to the allotment every Saturday with his dad. Told all the things they planted and had a lovely conversation, all plausible if he had been about 10yo.
He then went out of the room, came back in about 5-10 minutes and had the same conversation almost word for word.

So I wouldn't worry about that lack of memory unless it's becoming frequent. My experience is that it's much more of a fantasy world than just a simple lack of memory.

And just having thought about it, 2 days ago was Monday not Sunday, so I didn't even get the day right when wondering what I'd had for dinner two days ago!

Sorry you are having to face this. Early onset is such a thief.

Get some advice on finances. If your husband develops this, there will be help with a Carers Allowance to pay for some assistance/equipment etc. But a lot of equipment and adaptations can be done for free if you know where to ask. The Alzheimers Soc. is excellent for advice on this. Care will be paid for by you until your assets (not including home you live in) are reduced to I think it's £29k. to be honest my Mum (Dad has alzheimers) now says she wishes they'd spent more and not saved so much, it's all going on care and then it'll end up being funded in a year or so's time anyway. It's not like they are millionnaires wishing they had free care, they only worked in a factory and an office in ordinary jobs. Not suggesting you don't save, but you won't really benefit from it so much in the long run if your DH does develop a care need.

Housing - that's what I'd sort out now. A home either without stairs (flat with lift/bungalow) or large enough that he could live downstairs only. Parents are now sleeping in dining room as bedroom but there is no bathroom downstairs (loo only) and that means Dad's only had bed baths for over a year. Now Dad needs a hoist they are going to turn living room into bedroom as there's more space. They could move somewhere more convenient, but we have enough trouble convincing Dad he really lives there as it is

DH really doesn't want to go into a home. He also doesn't want to be a burden on me. I'm afraid if he gets diagnosed he'll try to top himself :-(. The whole thing isn't something we've been able to talk about much. He must be petrified, poor thing.

I think our current home is suitable. Everything he would need is downstairs and he could gave a bedroom there. I could have some space to myself upstairs plus there's room for a carer to stay over. Plus our neighbours here are very nice and the location is convenient.

In terms of savings, I think any money in an account in my name only doesn't get counted among his assets and I don't think I'd have to declare it. Of course, everything could change in terms of government policy by the time it happens, if it happens. It makes it maddening trying to plan.

And thank you for all the advice, kind words and flowers.

Alcoholism is a strong indicator for Alzheimer's - you don't say which gene he has (presumably one of the ApoE variants) but if it's any comfort, serious alcohol abuse can in itself lead to, or exacerbate, dementia. The early onset of his mother's condition may very well have been linked to that.

There's some evidence that some forms of Alzheimer's are linked (we don't really understand how) to similar processes that cause diabetes. Dementia is also not helped by poor vascular health.

If I was your DH, I'd be stopping smoking if he does, I'd be moderating alcohol intake (moderate is fine , no need to be TT!) I'd be making sure I ate a low GI diet (no need to be obsessive) and I'd be exercising regularly. All these things are associated with lowered risk, via better vascular health and blood sugar control.

At the end of the day, none of us know how our health will pan out. I think it's sensible to get the logistics in order but please, live your lives - if it is the ApoE gene he has, it's very possible he will not develop dementia. It's not as strong a link as some of the breast cancer genes for example.

Finally, I'd recommend a good checkup with a sympathetic GP every year. If you catch it early, there are treatments that can slow decline.

Thank you Skiptonlass, you sound very knowledgeable on the subject. He has one copy of APOE 4 as far as we know (just via 23andme). He doesn't smoke and barely drinks (he just doesn't enjoy drinking) so that's good. Yes we are hoping the early onset of his mother's illness is mostly due to the alcohol. We both eat a low GI diet and he exercises regularly... unfortunately he's obese which I know increases risk but he's losing weight at the moment.

Yes, we definitely live our lives, go on holidays, and enjoy ourselves. It's not all doom and gloom around here - in fact we don't really talk about it but I think we should. I will try to get him to see a GP but with him that's always a challenge (for example, when I found him rolling around on the floor with pain from kidney stones he was saying "I'm fine, I'm fine, I don't need a doctor!). Stubborn as a mule :-).

There is now research that reckons being overweight protects you against dementia:

www.bbc.co.uk/news/health-32233571

CatWoman - stories like yours are what makes me so cross about these private testing companies. You've been left high and dry with this alarming-sounding information and no help interpreting it or access to genetic counselling. It's unethical IMO, and my heart goes out to you and your DH.

First, the ApoE4 allele is associated with late-onset Alzheimer's, not early onset, so it's unlikely that it was strongly linked to his mother developing the disease so young. As previous posters have said, the alcohol is likely to have played a large part in that, sadly.

Second, his risk as an E4 heterozygote is about 4x higher over his lifetime, which is not insignificant but it certainly doesn't make it 'the gene for Alzheimer's' in a deterministic way, unlike e.g. the mutation associated with Huntingdon's disease. In the case of ApoE it's just one of many risk factors (some genetic, some environmental). The fact that you both have a healthy lifestyle, plus the changes suggested above, are certainly positive and will help protect against many diseases. But I would urge you both to try not to dwell too heavily on his Alzheimer's risk, as the stress and worry may cause more harm to your overall wellbeing than the risk of the disease. I know it's easier said than done though!

So sorry you are living under this shadow.

Scientists are still trying to understand / assess those studies, which show lower risk for BMI 25-30 for people aged 40+
Maybe because BMI is rather crude and does not consider % muscle and % fat, or how the fat is distributed. Also, people tend to lose weight with serious disease.

However, all studies agree that being obese - BMI> 30 - increases the risk.
So, your DH should at least aim to get BMI below 30. Also try to reduce waist

Finances
Definitely start thinking now about separate finances, because they may go back a few years if they think you deliberatelt stripped his accounts after symptoms started.

Also keep checking on changes in the rules about his share of the house being used to fund care home fees, if that becomes necessary. The council can't force you to sell if you own jointly, but may in the future register their claim to part of his share, thus possibly removing this amount from his estate.

You would get various allowances for increased living expenses, but very difficult to get the capital expenditure for conversions.So, use savings for any conversions, builds, moves etc that would make life easier if the dementia happens.

Please heed what outofcheese has said, she is speaking a lot of sense.

Apo4E is a risk factor, not a determinant. The result you have been given indicates that your DH has a higher than average risk of developing Alzheimers compared to the rest of the population.

If the result is causing anxiety you should talk to a genetic counsellor who can help set out the relative risks and chances of actually developing the disease, you may find that the chance is a lot less than you thought.

These genome resting companies are being unethical- you would never be put forward for that sort of testing in the NHS without genetic counselling before or after.

Ah I'm glad someone clarified that as I'm not too up on exactly which gene means what. I assumed he had the early onset gene. I did know that if you have the early alzheimers mutation then you are almost certain to develop it, but the 'normal' Alzheimers genes, are really very complex and carrying one only shows a fairly small increase of risk of developing the disease.

Anyway, I looked it up, and here's some more about the gene side of things.
www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=168

So I think you need to talk to him about it. OK, genetically he has a slightly higher risk of developing it, but as others have said, there are many other factors too. You are in a good financial position, your home is suitable should it happen, then get on with your lives and forget about it. Don't let it cast a shadow.

Wow, thank you all so much. I'm feeling much better about his chances and it seems I was assuming some misinformation. I guess basically I was placing to much weight on APOE 4 for his mother's case and not enough on the alcohol. So hopefully her outcome will have little bearing on what is likely for him.

But don't be too harsh on the testing companies, please. Overall we're very happy to have the information we have from our tests (and have even connected with second cousins on my side from it who I'll be meeting next month)... but I digress. The 23andme information does explain that APOE 4 links with late onset but that family history plays a large role. I jumped to the conclusion that the gene plus his family history meant it would be likely to link to early onset instead for him. But OutofCheeseError's explanation that his mother's case is probably not linked to APOE 4 and it's a coincidence makes more sense.

Hi OP, sorry to hear you're going through this. I can't imagine the stress and worry this must be causing. I'm currently reading a book on the 5:2 diet, it's not as faddy as it sounds and it says some interesting studies have been done on mice to show it improves cognitive function and delayed the onsite of certain diseases such as Alzheimer's. Might be worth a google.

Thanks, rubyroux, we might give that a try.