How fast will this progress? What to expect in the early stages?

[HangingOnJustAbout]

Dad's friend had altzheimers diagnosis and dad was joking how his memory is much worse. Family generally said maybe he should get checked out and he did, none of us including him expected him to have it.

He's just turned 69 and is currently just a little forgetful, as in why did I go upstairs and what was I just saying?

I wasn't at the appointment and dad's just saying it's fine, they've given him some meds abd he has tears ahead of him and hell cross the bridges as he comes to them. That seems a healthy attitude at this stage.

But mum (and to a lesser extent us kids) want to know what to expect in the next year or two. It's a distressing condition to read about and all the info seems to be aimed at a later stage where the person is at risk or needing carers.

Is there anywhere I can get info on how fast he's likely to deteriorate? Is 69 quite young and is that a good thing, does he have longer than I'm seeing online? Is there anything that can be done to slow progression?

I know it'll be case by case but is he likely to go from slightly forgetful to serious life impact in a year or two? He had so many plans for his retirement and we need to figure out how to get them in while he still can.

Thank you.

I'm assuming he actually got a diagnosis but it's not very clear from your post?

69 is not particularly young to be diagnosed I don't think. In terms of progression it's not easy to predict and will depend a lot on the type he has. Some are more aggressive. My dad was diagnosed 3 years ago. His short term memory is pretty non existent but he is totally independent and is still great fun and "himself" in most ways. Other types progress more quickly.

Hi there, sorry to read about your dad. As pp says, dementia progresses very differently in different people. If he's been prescribed meds (Aricept?), it sounds like they're working with a diagnosis of Alzheimer's disease. The medication can be excellent at suppressing symptoms for a few years.

In terms of planning, it's the same as any 69 year old in many ways. You're nearer the end of your life than the beginning - put your affairs in order and make the most of what you've got left.

The reality is that no-one knows what's round the corner, and that there are people his age without a diagnosis of dementia who he will outlive, iykwim.

Have a look on the Alzheimer's Society website - there's lots of practical and reassuring information that might be helpful to him, your mum and you.

Sorry, my thoughts are a bit garbled.

Yes he got diagnosed (they just said he has altzheimers) and the doc gave him sone medication, I need to find out what.

Thanks for your reply.

Has he only had one appointment? There's not a simple diagnostic test for Alzheimers, so there's normally a series of tests and sessions.

It's a 'disease of exclusion' so a condition that doctors diagnose when other possible causes have been ruled out.

He's seen a few people and had a scan. Seems to be a positive diagnosis. I will ask what meds.

Okay, cross posted. I'm sorry to hear about your Dad. It must be a shock.

If he agrees, then I would see if it's possible for a family member to start to go to medical appointments with him so that you know what has been said. It may be difficult for him to recollect the detail.

If he still has capacity, he needs to get all the legal stuff sorted out ASAP. Powers of Attorney for Finances and Health & Welfare, Will and letter of wishes. Someone needs to be with him for medical appointments and take notes, they should also be on the Dr's system as the nominated carer which allows them to discuss his treatment. He'll also be eligible for Attendance Allowance at the lower level (higher level if help needed overnight etc) and should get an SMI discount on Council Tax.

Have the difficult talks, ask all the things you've wanted to know about them. Talk to them about how they want to be cared for when they need help. Tell him how much he means to you. Make the most of the time you have together.

One thing I have learnt since my dad's diagnosis is that you can't dictate how someone wants to approach their diagnosis and what steps they want to take. PP suggested you do lots of talking and planning. My dad doesn't want that. We have done the POA and he is in touch with a dementia nurse but other than that he does not want to discuss end of life plans or have deep and meaningful conversations. My natural reaction to his diagnosis was to try to plan and also to try and find solutions to slow decline eg through diet and supplements. My dad doesn't want that. I suggested I go with my dad to his appointments. He doesn't want that. He wants to feel autonomous and independent for as long as possible. So my advice is also to treat your dad with as much respect as a grown adult as possible and be led by his wishes.

Totally agree with this

Hey there,
I can not help with time scale, I have been looking into this as all my grandparents went this way and I am beginning to feel forgetful myself.

I am hopeful about lifestyle interventions, essentially a low carb diet and supplementing with MCTs.
This gives more info if you are interested.
Best of luck.

To give you an example, our relative was diagnosed with dementia 2.5 years ago at 75, and in that time has gone from fairly mild confusion to needing to go into a care home. He stopped driving within six months of diagnosis, and has become increasingly dependent on help with things like dressing. It's not Alzheimers though, which I think can progress a bit more slowly. And there were signs for a year or two before diagnosis, looking back.

I'm really sorry, it's a desperately sad diagnosis to get, particularly at that age.

It is different for everyone and the medication is useful to help with the early stages. At this point it is practical tasks that need to be done, wills, powers of attorney, think about their house - could a downstairs room be used as a bedroom or a wet room/walk in shower be installed? Better to move to a bungalow? Also is the house accessible by public transport? Parking available if external carers are visiting?

Not things that need to be done this weekend (though filling out the attorney paperwork should be prioritised this month plus do your mothers too, they just sit in the background until needed once filed) but food for thought. If moving is needed it's far easier done in the early stages

DMIL had a different form of Dementia, she had Vascular. We were told at the time she was likely to live for 5 years and she did. With the lady 2 being in a Care Home. She would have probably benefitted from being in one earlier though but DFIL was very fixed about her being at home even though neither of them were coping or happy.

Some things I'd recommend for now:

The Twilight Shepherd gives very practical advice on guiding your DPs through their later stages of life.

The Contented Dementia Book

The Elderly Parents section on MN is actually very good and very supportive

Talk to your DM about how she's feeling. Maybe get someone to take your DF and you take your DM out at the same time so she gets a break

Try and get your DM to contact her local Carer's Hub. They can be an invaluable source of information and support.

If they haven't already, see if they are willing to accept a cleaner, a gardener and a milkman. All great at keeping the house going and all extra people keeping an eye on them.

Apply for Attendance Allowance but phone got the forms rather than download them. That way they will backdate payments to the ward if the phone call

Apply to have reduced Council Tax for them

Register him as a priority customer with their fuel suppliers

If he has savings above £23k see if you can get them to prepay funerals

Fill in and let on your phone the This Is Me booklet. It's very useful to give to Carers or the Hospital if he ever had an admission.

Again, fill in and keep the Herbert Protocol. It's a tool to collate all the information the Police will need if he ever goes missing to speed up the search. You'll need to google their police force and Herbert Protocol