typical trajectory of alzheimer's for planning future care costs

[falstaff1980]

Hi,

My mother has been diagnosed with Alzheimer's, her memory has been getting worse for years and now she's at the point where she can just about still make herself a meal and do the housework (she thinks), but someone needs to check on her every day (and I'm managing her finances and the house maintenance). She has no physical issues, still able to walk to the shops, get bus to city centre (but liable to forget why she went there).

I'm getting a care agency in, and looking at getting a care annuity to pay for the eventual full-time care she'll need, before I can do that though I need to estimate how her care costs are likely to increase over the coming years.

If she needs a daily visit at the moment, is it likely she'll need two visits in a year's time. At what point is full-time live-in care likely to be needed?

Hi

It's impossible predict a trajectory as lot of factors can cause a deterioration such as illness, tia/stroke, environmental changes and natural progression of the disease.

If she starts losing weight from forgetting to eat, wanders outside of the home, signs of neglect or has behaviour symptoms such as distress or agitation she will need extra support.

It's good to get care in at the stage she is so she's used it and has a routine for further down the line.

Medication may help slow down the trajectory .

As glowdownto says its pretty impossible to predict. My dad had a quick decline from just needing support at home, to needing full-time care (which we decided to be a residential home rather than in his own home). He lived there for 7 years before he died from the effects of a stroke.

As Glowdownto says, it's almost impossible to estimate. My mum was probably around 7 years from the end, when she was at your mums stage, but it could be longer than that - she masked very well for a while.

My aunt, who was older and in her 90s, was three years or so from the end.

Sorry you are having to travel this tough journey. If you haven't found the Alzheimer's Society yet, I found their website and the folks on their telephone helpline excellent.

Impossible to predict. My Mum went from forgetting a few things to unable to prepare a meal in 2 years, but can walk to her local shop. She can no longer get a bus anywhere as her sense of direction is shot. Luckily my Dad lives with her so no care required yet.

Agree with the others. Imposssible to predict unfortunately. And so incredibly stressful too.

My advice would be to try and stay a step ahead. Don’t assume that keeping her in her home for as long as possible is the best plan. We made that mistake and it made it extremely difficult to find a suitable care home when my relative needed it most. Would your mother consider sheltered accommodation at this stage? I appreciate it might be out of the question

Thanks all, this is actually helpful hearing your different experiences. I'm looking to get a deferred care annuity that will cover live-in care. This is where you give the insurer a pile of money and they guarantee covering the care costs for as long as the person lives, the longer you defer the start of the payments the cheaper it is (because the person might die before they even get the first payment). Based on the answers I'm getting here, I think deferring three years might be the one to go for, and if my mother needs full-time care sooner and there aren't enough savings left to cover it, and local authority care is not up to scratch (which I've read it often isn't) then I'll just do equity release on her house to cover it.

It’s good you are thinking about it but bear in mind she may get to a stage where live-in care isn’t possible. For example, if it’s too much for one carer to manage her alone. My experience is we assumed live-in care could be a long term thing but it was only possible for 9 months before things got too much to cope with for one carer at a time (and we had EXCELLENT carers)

Does the annuity also cover a care home? Does it cover full time care? My gran had daily care then live in care (the carer got 2 hours per day & 1 day per week off which my mum had to cover) then care home. Approx 2 years at each level but very hard to predict.

I suspect the annuity is not great value - if you have the money to buy that, when not just buy the care yourself?

Live-in care and care home costs where I live are about the same, though with live-in care there's still the extra cost of the house (bills and maintenance), so care home does work out cheaper in this respect.

Currently my mother is adamant that she wants to stay in her home till the end, like her mother did (also alzheimer's, 25 years ago). However, if it gets to the point that she's at home and asking "when are we going home?" I think I'll move her to a care home.

Think by the time you are aware of the dementia its already moved on a stage. They mask it very well.

We had to move in laws into assisted living in December due to worsening behaviour. FIL diagnosed with dementia - mainly forgetful and MIL struggled to cope. This highlighted that actually MIL was worse than FIL and by March she was in a dementia care home which costs £2,000 a week. This was via an emergency DOLS. No amount of care in the home would have kept her and FIL safe. Things can happen extremely quickly.

It’s not just the costs of the live in care at home. You will be managing the carer(s), the admin, bills and shopping etc and any maintenance on the house. If she starts to need help at night you will need a night carer as the one working in day can’t do both if too many disturbances. At a care home these responsibilities are removed.

This is all so relevant as one of the hard things about dementia is just the not knowing how it will progress. You can google it myriad times, and believe me I have, and still be none the wiser. I am both comforted and horrified by stories I hear of people lasting 20 years. Actually mostly horrified, if that's not too awful to admit, especially those 'she died at 99 after nearly a decade of double incontinence, being non verbal, bedbound and not recognising us' ones.

For what it's worth...
Mum's speech was slurry from end of 2020 but Dad covered for her and I think she'd probably had mild cognitive impairment before that (<80 yo at this point)
2021 diagnosed with MCI.
2022 diagnosed with early dementia and we got carers a couple of times a day, but this was as much for my father with Parkinson's.
2023 The carers escalated to two live-in carers (ostensibly for my dad) but when he died, she retained a full-time live-in. I thought at the time, a full-time live-in carer was excessive but she wanted to keep the two and actually as it turned out she was by this point totally reliant.
2024 her mobility deteriorated rapidly. Partly this was because it was able to as she had carers, partly this was the way it was progressing (it would have happened anyway but maybe it was more rapid).
House was becoming increasingly impractical and we either had to make huge adaptations (expensive, disruptive) or move her to a home. GP advised that it would be better to move her while cognitively she was quite good and able to form new memories.

So there we are - from a mild cognitive impairment to needing two people to get her up in three years. But health-wise she's absolutely fine (takes nearly no medication).

I would say be flexible about the care home thing. There comes a point when you can have so much equipment and so many carers at home that you wonder what the actual difference is, other than it being vastly more expensive and time consuming. I'm spending much more time talking to my mother now,