When is the best time to move after a dementia diagnosis?

Our Ask an Expert column explores the subject of moving home after a diagnosis. 

Moving and packing tools

Q: 'My wife has vascular dementia, and I expect we’ll eventually need a smaller house closer to our son’s family. Should we move now or wait until we really have to?'

After a dementia diagnosis, many people think about moving home when planning for the future. Moving home can have a big impact, and being concerned about how the person with dementia might cope with it is understandable.

Unfortunately, there is no simple answer to when you should do this. It depends on your individual situation, and you’ll need to balance the benefits, such as being closer to family, with any drawbacks.

Balancing

Generally, a person in the earlier stages of dementia is likely to cope better with moving home than someone in the later stages.

However, other aspects of your wife’s life could also make a difference. For example, has she been used to moving home often, or is it an unusual experience for her? Does she have many important memories associated with where you are now?

If you decide to move later on, when her dementia is more advanced, there are still things you could do to make it easier for her.

Preparing

With preparation, time and support, you could help your wife settle into a new home.

Keep the environment as familiar as possible by using furniture or decorations that she’s used to. This might include painting or changing the front door to match the old one.

Leaving the bathroom door open and a light on at night may help her get around a new layout, as could signage and automatic sensor lights. Other technology, such as clocks that tell you whether it’s night or day, may help her orient herself. An occupational therapist should be able to advise on devices – ask your GP or local authority to be referred to one.

A person’s behaviour may become out of character as they get used to a new home, and it’s worth being prepared for this. Your wife might be more confused and disorientated, or she might seem less able to cope. There could be more distressing aspects to these changes, such as accusations or repetitive questioning.

Deciding

If the person with dementia isn’t able to make a decision for themselves about moving home, a decision will need to be made for them.

In England and Wales, this would usually be by an appointed attorney or deputy for health and welfare. If there is a financial element to the decision, an attorney or deputy for property and affairs would be involved.

In Northern Ireland, the decision would be made using a best interests decision-making approach, and any financial aspects would involve someone appointed through an enduring power of attorney.

Decisions made on a person’s behalf must be based on their best interests, taking into account their past or present opinions. It’s important to involve the person in the decision as much as possible.

Dementia together magazine: Apr/May 18

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14 comments

My brother has dementia frontotemporal lobe. He is physically well and has his own flat. The flat is now in a difficult state and there is hoarding. We would like him to move to near us in extra care sheltered if he can as having his own flat is very important to him. I worry also can he adjust to a new area. He feels very safe where he is, but it's in a poor state of repair. Any advise would be appreciated. Thanks

Hi Donna, thank you for your comment and question. We'd recommend speaking to one of our trained dementia advisors by calling our support line on 0333 150 3456. They may be able to offer guidance and support that's specific to your situation with your brother's living arrangements. (More information on opening times: https://www.alzheimers.org.uk/dementia-connect-support-line)

You may also benefit from joining our online community, Talking Point. Here, carers and other people affected by dementia share their experiences, and offer advice and support to others going through similar situations. You can browse the conversations within the community or sign up for free: https://www.alzheimers.org.uk/get-support/dementia-talking-point-our-online-community

We hope this helps for now, Donna.

Alzheimer's Society blog team

My father has vascular dementia which was diagnosed December 2018.
After my mum died last year dad came to live with my daughter and I.
He is still able to shower and dress himself but has trouble with short term memory loss and sometimes confuses morning with evening.
My daughter and I want to return to Spain with him as we have an apartment there and we are both becoming extremely depressed living in the uk. I lived in Spain for nearly 40 years before coming over to help mum and dad out.
I don’t want dad to go to a care home. What are your thoughts on taking dad with us back to Spain where he can get out for walks every day and enjoy the rest of his days in the sunshine.

Hi Debbie,

Thanks for your comment, and sorry to hear about your father's diagnosis.

We'd really recommend speaking to one of our dementia advisers for guidance on this. Each case can be very different, so it's difficult to advise without knowing a bit more information. To do this, you can call our Dementia Connect support line on 0333 150 3456

The support line is open seven days a week:

9.00am to 8.00pm Monday, Tuesday and Wednesday
9.00am to 5.00pm Thursday and Friday
10.00am to 4.00pm Saturday and Sunday.

I hope this is helpful, Debbie.

Alzheimer's Society blog team

My 75 year old brother has been diagnosed with early Alzheimer’s and is currently living in his “dream home”. His home is located on 6 acres, a good distance from his closest neighbor. Something he has always wanted. He has indicated on numerous occasions that he doesn’t want to move now. His wife and children feel he should move soon to a neighborhood. He understands that moving to a.neighborhood is eventually necessary, but he is not ready. Please provide guidance

Hi Dan,

Thanks for your comment, and sorry to hear about your brother's diagnosis.

We'd strongly recommend speaking with one of our dementia advisers who can give specific support and guidance on this issue. Unfortunately there's often no simple answer, but our advisers can learn a bit more about your brother's situation and provide guidance.

To speak with an adviser, just call our Dementia Connect support line on 0333 150 3456.

The support line is open seven days a week:
9.00am to 8.00pm Monday, Tuesday and Wednesday
9.00am to 5.00pm Thursday and Friday
10.00am to 4.00pm Saturday and Sunday.

We hope this help, Dan.

Alzheimer's Society website team

My husband has been diagnosed with vascular dementia. He is unsteady on his feet and has almost fallen downstairs a few times. We have lived in our house for almost 40 years, but when he is 'sundowning' he asks when we are going home and it's as if we are on holiday and he doesn't recognise things - he asks how they got here as we have the same things at home. We have the chance of a bungalow which would be much safer for him and easier for me (osteo arthritis, lymphoedema, breast cancer 4 years ago, crohns disease). It is also in the same street as good friends. Has anyone had experience of things like this wanting to go home, needing to meet Pat (me!), having to lock the site up (former builder) and other upsetting and unsettling episodes? I really don't know what to do for the best as we have no downstairs cloakroom or bedroom. Please can someone suggest anything to help?

Hi there and thanks for leaving a comment.

It sounds like you might benefit from talking with other people affected by dementia within our online community, Talking Point. Feel free to browse and read others' experiences, or create an account to reply and connect with others. You may find similar situations to your husband's shared there: https://forum.alzheimers.org.uk/

You can also speak with one of our dementia advisers by calling the Dementia Connect support line on 0333 150 3456. This is a great way to get dementia information and advice specific to your situation. (More information about the support line, including opening times, here: https://www.alzheimers.org.uk/dementia-connect-support-line)

In case it helps, here's another article we've shared about the question 'I want to go home': https://www.alzheimers.org.uk/blog/i-want-go-home-what-to-say-to-someon…

Please do call the support line if you need to speak with someone about this.

We hope this is useful.

Alzheimer's Society blog team

My mother was recently made homless by her partner selling the house were my mother with alzheimer's has lived for over sixteen years. I have managed to get her a place in an extra care home but every time I take her there she always says I'm not living here .
We have put all her familiar ornaments ect in the flat but still getting the same reaction when we get there .
I am at the end of my tether I dont know what to do she has no choise how can I get her to want to be there .
Iv been taking her daily for the past week and nothing then she will be sitting on the sofa at my house and say when am I getting my own place help

Hello Kelda,

Thanks for getting in touch. It sounds like you're going through a really tough time at the moment.

We'd recommend speaking with one of our dementia advisers - you can chat through the current situation with your mother and they will provide you with information and support. Call our Dementia Connect support line on 0333 150 3456, but please be aware of Christmas opening hours: https://www.alzheimers.org.uk/dementia-connect-support-line

In the meantime, in case it's helpful, we previously wrote a blog post tackling the difficult situation when a person with dementia wants 'to go home': https://www.alzheimers.org.uk/blog/i-want-go-home-what-to-say-to-someon…

We hope this is useful for now.

Alzheimer's Society blog team

Help !! I live in abroad, my Mum sisters and brother live in UK along with extended family of Mum's. Mum was diagnosed about 3 years ago her memory remembering what happened this morning or yesterday is bad, but she still remembers all the family and I talk to her daily,she does now need help with everyday living making meals ect,but dressing toileting is not an issue, she dresses herself,makes her bed. the problem with Mum was she was frightend and feeling confused and I feel althrough my sisters and brother are living near her, only one sister tried to help and sort things out and she didn't cope, Mum was a nurse and worked in the NHS for all of her working life she looked after people with this disease and always said please never put me in a care home, it was her worst nightmare. to cut a long story short and it would take too long to go into it, Mum went into hospital she had hallucinations one night (my brother we found out was phoning Mum at night and not speaking then putting it down he had been financially abusing her as well we had put a stop to that, this was difficult to deal with, my sister found out it was him as she was there one night when it happened, Why I don't know). I thought the hallucinations could been a new medication, along with the stress she was going through she needed help and was not getting comfort, my sister on leaving the hospital took Mum to the care home telling her her flat had been flooded and she was only staying here untill it was fixed I didn't agree i feel it was too early for this step, but my sister said she couldn't cope as she got no help, Mum did say to me why don't they let me stay with them untill my flat is fixed she felt so bad she kept saying I would always help them when they needed it, she didn't know that there was no going back. my Mum is so distressed every time i speak to her, wishes she was dead she feels she is locked up for no reason it is breaking my heart she feels no one loves her, even though she has family no one comes to take her out, I am planning to come back as soon as I can but it will only be for weeks I have been here 35 years, but all Mums money has now gone as the care home she went into was expensive i know its too late to fix what my Mum wants which is to go home or live with one of my sisters, my sister the one who did try has moved away after always being the one who was with Mum, Mum helped every one over there financially and mentally supporting them when they needed it but as soon as she was diagnosed it feels as through they backed away. I would just like to know if there is any way someone from your society could visit Mum and talk to her about how she is feeling, its terrible to listen to the heartbreak she is going through, when I phone they say Your Mum is fine she is quite happy, but Mum is good at putting on a face sometimes, she feels she has to pretend she is Ok, as soon as she hears my voice she is just devastated and wants help, what can I do

Hi Elizabeth,

Thanks for getting in touch with us. I'm sorry to hear about the developments in your mum's condition - this sounds like a really difficult situation for you both.

As your situation is quite specific, I'd strongly recommend getting in touch with our helpline to speak with one of our Dementia Advisers. They can provide information, advice and emotional support, and they'll be able to advise on the best ways for us to support you and your mum.

The number is at the top of this page, or you can contact the team via email or live chat. Please find full contact details for the helpline and opening hours here: https://www.alzheimers.org.uk/get-support/national-dementia-helpline

I hope this is helpful, and please don't hesitate to get in touch.
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Alzheimer's Society blog team

Help. My dad has advanced Alzheimer's and my stepmother has recently announced she and he are moving to a new home 60 miles away. Dad has major anxiety about being away from home - like most Alzheimer's sufferers, he craves familiarity - and is distressed about the proposed move. Major declines in his health have all come during or immediately after stays away from home. And yet my stepmum is pressing ahead, even telling me she wants a change while she's young enough to move on (they're both in their 70s and she's in good health). She barely mentions the effect it will have on Dad, saying he soon won't remember where he is anyway. I have a good relationship with her and don't want to burn bridges (I'm terrified any fall-out will lead to her stopping me seeing Dad), but I need to frame any argument with some genuine facts. Please can someone advise.

Hi Nick. We're so sorry to hear about your difficult situation with your Dad, stepmum and the potential house move.
We strongly recommend speaking with our National Dementia Helpline advisers - they will be able to discuss this matter further and provide you with support. Please call 0300 222 11 22 from Monday to Wednesday (9am-8pm), Thursday to Friday (9am–5pm) and Saturday to Sunday (10am-4pm). We also have a live online advice service. Find out more about our helpline services here: https://www.alzheimers.org.uk/get-support/national-dementia-helpline
Additionally, you may benefit from joining our online community where you can share your experiences with other people affected by dementia. Learn more about Dementia Talking Point: https://www.alzheimers.org.uk/get-support/dementia-talking-point-our-on…
We really hope this helps, Nick. Wishing you the best of luck.
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Alzheimer's Society Blog Team