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‘I want to go home’ - What to say to someone with dementia in care
Here are some ways family members and primary carers can approach the difficult question, 'What do I say to someone with dementia in residential care who wants to go home?'
It's not uncommon for a person with dementia to say they want to go home. This may be caused by time-shifting or general confusion, and can be distressing for everyone.
Below are a few considerations on what to say to someone in this situation who wants to go home.
5 things to remember when someone with dementia is asking to go home
1. Avoid arguing about whether they are already ‘home'
For a person with dementia, the term 'home' may describe something more than the place they currently live. Often when a person with dementia asks to go home it refers to the sense of ’home’ rather than home itself.
‘Home’ may represent memories of a time or place that was comfortable and secure and where they felt relaxed and happier. It could also be an indefinable place that may not physically exist.
It’s usually best not to try to reason or disagree with the person about where their home is.
If they don't recognise their environment as 'home' at that moment, then for that moment, it isn't home.
Try to understand and acknowledge the feelings behind the wish to go home. Find out where 'home' is for them - it might not be the last place they lived. It could be where they lived before moving recently or it could be somewhere from their distant past.
Often people with dementia describe 'home' as a pleasant, peaceful or idyllic place where they were happy. They could be encouraged to talk about why they were happy there. This can give an idea as to what they might need to feel better.
2. Reassure them of their safety
The desire to go home is probably the same desire anyone would have if we found ourselves in an unfamiliar place.
Reassure the person verbally, and possibly with arm touches or handholding if this feels appropriate. Let the person know that they are safe.
It may help to provide reassurance that the person is still cared about. They may be living somewhere different from where they lived before, and need to know they’re cared for.
3. Try diverting the conversation
Keep a photograph album handy. This could be a physical book or photos on a tablet or smartphone. Sometimes looking at pictures from the past and being given the chance to reminisce will ease the person’s feelings of anxiety.
It might be best to avoid asking questions about the pictures or the past, instead trying to make comments: 'That looks like Uncle Fred. Granny told me about the time he....'
Alternatively, you could try shifting the person's focus from home to something else - such as food, music, or other activities, such as going for a walk.
4. Establish whether or not they are feeling unhappy or lonely
A person with dementia may want to 'go home' because of feelings of anxiety, insecurity, depression or fear.
Think about whether the person with dementia is happy or unhappy when they mention going home. If they are unhappy, it may be possible to discover why. If they cannot tell you why, perhaps a member of the staff or another resident knows why.
Like anyone, someone with dementia may act out of character to the people closest to them as a result of a bad mood or bad day.
Does the person with dementia keep talking about going home when people are not visiting them in the care home? Does he or she seem to have settled otherwise? Ask the staff in the home as they may know.
5. Keep a log of when they are asking to go home
Certain times of the day might be worse than others. What seems to be the common denominator about these times? Is it near meal times (and would a snack perhaps help)? Is it during times when the environment is noisier than usual? Is it later in the day and possibly due to ‘sundowning’?
If you see a pattern, you can take steps to lessen or avoid some of the triggers.
This article was first published in 2018 and most recently updated in January 2024.
How can dementia change a person's perception?
People with dementia experience changes in how they perceive things. This includes misperceptions and misidentifications, hallucinations, delusions and time-shifting
Rosalie
saysI
am talking care of a friend's mom who is staying with me for 7 days she keeps wanting me to take her home or wants to walk home I keep telling her tomorrow How can I keep this going for the next 5 days I feel awful lying about it she has no idea her daughter went away and thinks she was here for a visit only
Mike Sheehan
saysMy wife has had alzheimers since 2013.she recently had the worst dip .she no longer dress clean or use toilet she cant feed herself properly anymore she constantly wants to go home she has no concept of time she wakes up during the night wanting to dress and go out.
Catherine Merrell
saysI coped with my husbands Alzeimers for 4years at home until I just couldn’t take any more of his aggression...he wanted me to inspect the drains at 3am or wanted all the lights out as he was flying and the enemy mustn’t see us...he would also shout at the top of his voice, convinced he was on the Parade Ground
Are other ex Service men affected like that
I go to see him for 1-2 hrs every other day...Being close by was a vital element when looking for a Care/Nursing Home
Cathy
saysMy mother has vascular dementia and keeps asking to be taken home or come and live with me. I am 63 & have a bad back & fribromyagia. She is unable to stand & is incontinent. We have a small home and would struggle. Every time we take her out, she doesn’t want to go again, then I get verbal abuse for not taking her out. She seems to have a downer on my husband, who has always been there to help mum & dad out. We took them on holiday every year. She keeps asking where Mum is. She asked me honestly is she still alive, I said no that she passed a long time ago, she got so upset. It’s so hard. I feel guilty that I can’t her out on my own, as she needs help I the car. My husband is 72 and he struggles also. I visit my Mum, 3 or 4 times a week, but I still feel guilty.
Janet Sidebottom
saysAww Cathy...it sounds as though you and your husband are doing a really good job in exercising her memory when visiting and taking her out for a drive. I’m going through the same thing with my mum and she says the same things to me as your mum.
I also feel guilty but you must remember it is the dementia speaking and that she is being cared for and is safe. Keep telling her she is cared for/loved and safe.
You are doing the right thing for you but remember to take care of yourselves.
Zulma
saysHi I am looking for advice n ways to deal with all these phases of dementia. My mom is 85 years young and she has been saying that her home of almost 40 yes is not her home. She feels unfamiliar in her own bedroom and in every part of her home. She sees things that are not there and she keeps saying she can't find her little daughter. The woman of her generation all suffered with this until it turned into alziehmers. It's so hard to know what to say .please help I don't know how to approach this new life my mom is heading into. My mom is my world , Thank you all who can help I am in need of advice from people who lived or are living it not just a doc. Who says it comes with age. Thank you again.
Anonymous
saysHi Zulma,
Thanks for getting in touch.
If you're looking for advice from people who have been affected by dementia, then I'd recommend looking at our online community Dementia Talking Point. It's free, open day or night, and you can read other people's experiences or post your own question: https://forum.alzheimers.org.uk/
It's important to know you can also contact our helpline for information, advice and emotional support. If you have any specific queries, or just want to talk, one of our trained dementia advisers can help. You can find the details here: https://www.alzheimers.org.uk/get-support/national-dementia-helpline
Hope this is helpful,
--
Alzheimer's Society blog team
Virginia garside
saysMy 90 year old dad is now in a nursing home with dementia his weight now is 38kilos he wont eat ,he talks in a whisper he's exhausted but something is troubling him. He just will not let go he says hes troubled but he does not know why. I find it so distressing I hate to see him like this.
Anonymous
saysHi Virginia,
Really sorry to hear about your dad's condition - that sounds really distressing for you both.
If you haven't already, please do contact our helpline to speak with one of our dementia advisers. They can offer information, advice and emotional support, so if you speak with them about your situation they may be able provide support that's helpful for you. You can give the helpline a call on 0300 222 11 22, or find the full contact details and opening hours here: https://www.alzheimers.org.uk/get-support/national-dementia-helpline
Hope this is helpful
--
Alzheimer's Society blog team
Sheila
saysI worked with PWD for many years .... enter their world and validate
Bernadette
saysI tell my mum a story of her life - and I usually say it everyday when I visit ‘when you were little you lived with your mum in Sth Melb, then you met dad and you moved to our family home in Burwood and we had a happy life with all the kids and neighbours and schools and then you moved closer to the shops, and church and train station and you loved going into the city and now this is your new home. During life we all have different homes - some for a long time and some for a short time. Now you have your own special room and we visit everyday and it’s a lovely new home’.
Jayne Taylor
saysMy Mum is almost 85, and was diagnosed with full blown Alzheimer's disease in 2013 it may sound awful but I'm not certain of the precise month only that she started to show symptoms in 2012, and spent her 60th wedding anniversary with my Dad who's 89 (90 in June 2020 hopefully) and visited her every day whilst she was in a mental health secure ward for 3 months having tests and the doctors defining the root cause and correct treatment before Mum could go home. In summary Mum's been a permanent resident in a care home since August 2018, and Dad's fortunately still able to drive and goes to see her daily for roughly an hour as he's in a great deal of pain when sitting with Mum in the communal lounge due to chronic osteoarthritis and Mum's fine until he tells her he has to leave and she gets anxious asking if she can join him. Her reasons are mostly static but occasionally she'll say it's because she's in unfamiliar surroundings and amongst people she doesn't know. Dad's reason is that he's simply going to do some food shopping & he'll be back with her soon, as after about 20 minutes her memory span means she forgets he's even visited. My fiancé and other family members are all hoping that they'll be celebrating 🥳 their 66th wedding anniversary on 18 March 2020 xxx
Tania Fisher
saysAlot of the time they say they want to go home and what they mean is they want to be with you... that is what makes them feel at home. So spend whatever time you can whether it is 30 mins or 2 hours .. and know you are helping. Don't feel guilty, any time you spend is giving. 😍
Elaine Rawlings
saysI have read most of this thread and would like to thank you all. I have- at present- mild cognitive impairment. After an active life - 4 sons, 7 grandchildren and a lovely husband and two careers - I feel my mental faculties falling away.
I saw my mother, grandmother, 2 sisters and a stepmother all die young from either Alzhimers or Dementia.
I am frightened (mostly) that I shall be isolated either physically or mentally.
Reading your posted about visiting i see that most of you are women. I have sons - will they be as understanding and will they take care of of me like a daughter would?
Jean Simmons
saysI always told my Mum that when the doctor said she was well enough to come home she would. She also used to say ‘don’t leave me’ and I always told her I would never leave her and I always ensured I would visit often, even if only for short times. She has now passed away but she was so well cared for in her lovely nursing home and I know she was happy there.
Shirley Garbett
saysHi some of your letters say about visits , my husband is in a care home he has Lewy Body Dementia been in permanent for 6 months ,after stays in hospital and fulls I go every day and stay for at least 4 hours I help to change ,bath ,games go in the gardens and have tea together it helps me as well as him and the staff are always greatful I talk to a lot of the other residents which they enjoy most don't have a visitor l feel so content doing this so it helps us both ,I think like hospitals they could have volunteers to go and see so residents I know from experience now that my husband has had it many years most would benefit from some contact so sad no one asked to get dementia but some are just put away just like the old mental hospitals good job the staff especially were my husband is are wonderful caring ,happy and always ready to help ,it was the most 💓 renching thing I have every had to do so I'm glad I'm allowed to help care for him still love to any one who is going though it now xx
Ruth Penalver
saysMy aunt used to go to respite when I went in holiday and always said “don’t forget to come and get me!” So when she went into a care home permanently and asked the same I used to say “I haven’t been in holiday yet!” After about 6 months she stopped asking when she was coming home!
Emma Tuttiett
saysThe home my 97 yo grandad is in have requested we find a specialist home as he is becoming more aggressive in his behaviour . He has been there for three and a half years and there website states they are specialists in dementia care ?
Moving him seems so cruel, we are hurt, angry and feel we are letting him down, we thought he would be happy there until his last days, it’s his home. !