Dementia Talking Point forum

Dealing with loneliness: Your questions answered by a dementia expert

Living with dementia, or caring for somebody who is, can cause feelings of isolation and loneliness. Read some highlights from our recent Q&A, in which our dementia experts give advice on what to do if you’re feeling lonely.

Our Talking Point online community is a place where people with dementia, their friends and family, can share stories and support each other.

Recently, we had a Q&A session on Talking Point with the topic of 'loneliness and isolation’. Carers could ask questions and get answers from Simon, one of our Knowledge Officers.

This blog post has some of the answers that Simon gave to questions from members - you can read the whole Q&A here.

Question one: Issues with deafness and dementia

Q: I often feel lonely and isolated as does my other half. He finds it hard to socialise because of his dementia and deafness. He finds it hard to keep up with conversations. But he doesn’t like me talking to people either and is always wanting to go if I am talking to someone. I can’t relax or have a good chat as I am always on edge.

This is a really great question as it shows the importance of other health conditions on quality of life in people with dementia. Many people start to lose their hearing as they get older, and this can have a big impact on their confidence in social situations. It’s common to make light of it and have a laugh when a person hears something the wrong way, but for most people affected it can be a real source of unhappiness. It can also contribute to low self-confidence and lower mood.

This might help to explain why your other half wants to avoid social situations, since they could be resulting in him feeling awkward and excluded. And, depending on the type and severity of his dementia, he may not have the empathy or ability to recognise your need for social interaction. So instead he thinks, ‘I’m not happy. This makes me feel bad. I want this experience to stop.’

An obvious place to start here would be to recommend that your other half have his hearing tested and gets access to a good set of hearing aids, if possible. This should hopefully reduce his feelings of social awkwardness and exclusion in social situations. I would also recommend that you get in touch with the charity Action on Hearing Loss as they can offer a great deal of expertise and support. They can send one of their support workers to come and visit you at home, providing you with advice on the best solutions to help your partner to hear as well as possible. 

If his hearing has been improved as much as it can be already, however, then the best thing you can do is try to understand the reasons why he is feeling ‘bad’ in these situations and address them as much as possible. So, ensure that whoever you are talking to includes him in the conversation, keep the level of communication relatively simple and easy to understand (by informing the other person how best to communicate and include him in the conversation).

True, it may not be as enjoyable for you as a normal carefree chat, but probably it’s a lot better (for both of you) than him getting frustrated, angry, and then demanding that you break off talking.

Question two: Loneliness in care homes

Q: My question is based on a worrying observation. I have visited various care homes and Mum tried one a few months ago. She got very depressed and isolated. None of the other residents even said hello to her. She is in respite again and trying a different one. But guess what, I noticed that the residents hardly acknowledge each other! This is on the residential floor with only mild or no dementia. This is terrible. Is this the norm? If so, what is our society coming to?

I’m so sorry to read that you’ve had such bad experiences with care homes for your Mum. Unfortunately, we do know that some are better than others, and that they can vary greatly in terms of how much social engagement and interaction goes on between residents and staff. Sometimes this is due to staffing issues or inadequate training, but there are many other factors too

It might be worth speaking with the manager at the home where your mum is in respite to see whether they have any social events for the residents, and/or whether they have an activities coordinator. This can sometimes help in terms of getting people to talk to each other and be more sociable.

If it doesn’t seem as though the home are very receptive to your concerns, or if you feel it isn’t suitable and things are unlikely to get much better, then it might be worth looking at other homes that might be more suitable. The Elderly Accommodation Counsel run a website called Housing Care which can be useful in looking for homes, and the Care Quality Commission are also useful to look at as they inspect homes to make sure they are adhering to government standards. On our website, you can find more information about selecting and moving into a care home.

Question three: Loneliness after a bereavement

Q: ‘My husband passed away a couple of months ago. I’ve got to the stage where I can go out and about with friends, but I still feel deeply lonely at night when everyone else is asleep. I’m hoping that in time, it will get easier. Can you suggest anything in the meantime?’

I’m so sorry to hear about your husband, and also that you feel so lonely at night. A grief counsellor could be very helpful for you, and Cruse Bereavement Care have a very good helpline. They also have a lot of resources on their website which might be useful to read too.

Your GP might also be a good person to speak to, and they could also refer you to a grief counsellor for face to face sessions. I’m also wondering if you have mentioned how you are feeling to your friends, and whether it might be possible for them to help you in terms of having company overnight. If they know how you are feeling, and if it is practical, then someone may be able to stay with you (or you with them) every so often to help you through this difficult time.

Talking Point is an excellent and supportive community, and as people log in from different time zones all over the world, you may find that you can get peer support throughout the night as well as during the day. This could be very helpful for you, as not only would this mean you can ‘talk’ to other people at night, but they may well be people who are in a similar situation to you. I hope these suggestions are helpful. Please do call our Dementia Helpline if you’d like any more advice or support, as I know that one of our Advisers would be happy to help.

Question four: Loneliness in rural areas

Q: ‘I care for my mum and live in a rural area. My mum struggles to communicate now, and I don’t really see anyone else. The nearest day centres and activities are miles away. What would you suggest?'

Accessing support in rural areas can be a nightmare for several reasons: (1) transport can be a real limiting factor as public transport is generally patchy and slow, (2) there are fewer people in the local area who share your particular circumstances than in more built-up areas (especially the case for people with rarer conditions or young-onset dementia), which means that it’s not always easy or viable to keep dementia support groups going, and (3) family and friends are more likely to live some distance away, making it harder to share the work of looking after someone with dementia, and for you to get a break when you need one.

So, what to do?

If there aren’t any dementia-specific support groups in your area, then think about any other activities you could get involved in – for example, gardening clubs, religious meetings (if applicable), yoga or tai chi classes, or whatever else you enjoy doing. Get online and have a look at your local newspaper. You may not get a massive choice, but any kind of social interaction will do both of you the world of good. Just make sure you ring up the organiser in advance and discuss your situation, check access, and brief them on anything they might need to know to be able to look after you.

When living somewhere rural or remote, social networks and online communities like Talking Point can bring great comfort. There are also support lines like our National Dementia Helpline available for when you just need to talk to somebody.

Lastly, try to contact friends (either of you or your Mum) and ask them over for a quick coffee and a chat. Be proactive. Don’t wait for the world to come to you. They may need a nudge! Some people will make excuses and not come, but others may do and enjoy the experience – especially if you brief them beforehand on your mother’s condition and how best to communicate. And also that they don’t need to worry about ‘saying the wrong thing’ – this can be a really big worry that prevents people from getting involved.

Question five: Getting support from friends

Q: ‘I’m a full-time carer for my wife, and I struggle to talk to my friends about my situation. We usually just end up talking about football. How can I get the courage up to talk to them about how I’m really feeling?’

This sounds very familiar! You have the weight of the world on your shoulders yet, when you’re with friends, you find yourself talking about totally inconsequential stuff like football or TV shows.

Dementia and other major life challenges can test the strength of social relationships. ‘You quickly find out who your real friends are’ is a common remark, particularly if you’ve recently had a diagnosis yourself.

Good friends who know you well and care about your wellbeing can be an incredibly valuable resource when caring for a person with dementia. Dementia is a lot more common than most people think, so you may well have friends with similar experiences who are more likely to understand what you’re going through.

There’s sometimes a culture of not talking about feelings – particularly between men. Or talking about ‘depressing stuff’. I think much of this is down to social context. Some social situations lend themselves to talking about this kind of thing more than others, so it can be good to try to pick the right one if possible. Think small groups or 1-to-1, rather than larger groups or celebrations (for example, not at a wedding!).

So, let’s assume you’ve got the right kind of friends and an appropriate social context. How do you then broach the ‘heavy’ subject of caring for a person with dementia when the previous topic of conversation was whether Tottenham are likely to ever win the Premier League? Hopefully, at some point one of your friends will be able to tell that you’re a bit worried/tired/distracted and ask how you’re doing, or how your wife’s doing – particularly if they’ve been friends with you both for a long time. This is the time to talk about the difficulties you or your wife have been having.

Don’t go straight into the really heavy stuff (unless you think you friend can handle it). Start with the general issues (“I just don’t seem to get any time to myself these days” or “I haven’t had a decent night’s sleep for as long as I can remember”) – things that don’t need any specialist knowledge or experience to understand or relate to. Your friend(s) can then choose to either encourage you to talk further about it (particularly if they’re genuinely interested or concerned) or they may decide to cut the conversation off.

If they aren’t particularly encouraging, it might be because the conversation makes them feel uncomfortable – for whatever reason, perhaps they don’t feel equipped to talk about the subject, they’re worried about ‘saying the wrong thing’, or they perhaps rather selfishly don’t want to talk about ‘real life’ issues. But in many cases you can help by (a) educating them a bit about the condition (not formally of course, but try to be informative as well as talking about your difficulties), (b) reassuring them that they’re not walking on egg shells, and that you don’t mind them being a big ignorant about the subject or saying something a bit ill-informed. They may be trying to do their best, so be patient with them.

I hope this helps. Best of luck!

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If you would like to talk to people in similar situations to yourself, visit Talking Point, our online community for anyone affected by dementia. You can also call our Helpline for advice and support over the phone.

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13 comments

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I used to have a fair number of friends but since my wife was diagnosed with Alzheimer's disease I have none really

Same here my dad has demenia and all our family and friends have turned there backs on us

I'm beginning to feel the same as you Katie,my partner of 30+ years has early/middle stage dementia,(she's 71)and one by one people seem to be distancing themselves from us."I'll give you a ring and we'll go for a coffee or something" is the sort of thing we get when we see people we know. They never do. I've told immediate family that early next year I intend to seek help and advise from our local Alzheimers Society.

I feel same lonely and isolation as I feel you can’t go out without worrying about the person you care for. Also each day is very different. I feel should be more support for carers as they seem to get forgotten about.

My mom has dementia I am taking care of her no body helping me

Being the one who has been told they have inherited Alzheimer's isn't exactly easy either- especially when you are on your own. (I had tests done as I was worried about it.) I did attend a local dementia group but found I was essentially on the same level mentally as the carers as I am in the very early stages. I am a widow and essentially have to just get on with things. My children are very supportive but don't live locally. I am well supported by my church - but it still isn't easy!!!!

I get out fora couple of hours a week, for essential shopping, I pay for it on top of a daily carer who helps change and wash my wife, other than that friends or family visit for 2 3 hours a week. Communication otherwise is the occasional text. Family have daily and evening responsibilities which limit their capacity to help. Not much respite from wife`s daily unstructured chat and daily conflict over taking medication, eating, drinking washing and changing. It is easy to retreat into onesself so the days drift aimlessly.

I find this extremely sad - it just shows that they find it too difficult to embrace the idea of a relative or friend who is living with Dementia.
Firstly , in cases like this, I just hope that they do not have to go through this situation themselves one day and since we are all living longer, there is now a higher risk than ever of someone you know or are related to, getting dementia, so would it not be a good idea to learn all about the disease so that you can face up to it by being better informed as it is not going to go away.

You do find out how much friends and neighbours mean. Fortunately I live in a small village and my neighbours really have rallied around me. Plus a Wee rescue dog had been terrific support for both of us.
You also find true friends who do their best to support one.

I lost my wife recently and can fully understand the loneliness felt especially if having had a major caring role.

I take a friend who has dementia to a Memory Cafe held in a local Church. It is for anyone who needs company and is particularly welcoming to Dementia sufferers and their carers. Do find out if there is one near you. Ot talk to your local Church or any community organization about starting one. One thing I notice is how valuable carers find the contact with others in the same situation and having a regular place to go each week.

I have looked after my husband 7 years . He has double dementia disorder . It’s a privilidge to look after him , but can be a lonely life .
I left my employment as a nursery nurse to look after him . Some days I cannot leave the house . His condition has deteriated over last few months . He is now on palative care . Needs help 24 hours a day x
He gets confused and scared X we just do our best to make him happy x I feel sad most the time , but don’t show it x

I diagnosed my wife with Pick's disease end of 2000, it took 'til end of 2004 for NHS to diagnose Early Onset Alzheimers which I disputed despite the ct scan showed the frontal lobes had atrophied and subsequent mri resulted in an FTLD diagnosis. She is still alive after all this time, but does not know my name or who I am and continually asks to go home despite having lived in our nice house for 35 years.
She is going aphasic but recently I asked her whether it bothered having a virtually non-existent memory and she simply replied "Why should it - it is not as if I can do anything about it." I wish I could always take that attitude and be as happy as she is despite having to deal with my frustration, impatience and falling tolerance levels. I plan to publish her (and my) story if you think it could be of interest and or help your others. I would prefer you to withhold publication until after you show interest in the whole story.

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