DM personality change after being widowed, worried it will lead to dementia. What can I do?

[WeekendInNewEngland]

My poor DM is early 70s and was sadly widowed 18 months ago. Since then she’s lived alone and although I thought she was coping amazingly, it’s becoming clearer that her anxiety and rumination on negative thoughts are causing issues and a change in her behaviour.

She has become bitter and angry about issues with her neighbours (some minor, some less so but definitely aggravated by her response to it) and has sent a couple of quite unhinged letters to them. She would not have behaved this way previously but I think her vulnerability now is causing her to be defensive of her property. She has told me she’s been losing sleep, and she goes over things again and again in her head as well as talking to family members about them. I am trying to help her practically as much as I can but easy, compromise-type solutions are rejected and she seems to want war and revenge instead.

She sees friends maybe once a month if that and has few interests other than gardening and watching GBNews and getting angry about what it tells her. I would love her to join a group, start going for little walks, maybe even get a little job as she is healthy and able. I have experienced loss and anxiety myself and know the benefits of meditation, mindfulness and gratitude but feel I can’t urge her to try these without sounding terribly patronising.

I know that studies have shown that negative thought patterns, lack of sleep and isolation are all linked to dementia and wish she would realise this and try to change her patterns. There is dementia in her family and her own sister went down such a familiar course of ruminating, negativity, bad sleep and staying in not seeing anyone before developing dementia and I don’t understand how she doesn’t see that she’s going the same way. She does eccentric things now that she would have joked about her sister doing just a few years ago.

Has anyone experienced similar and been able to encourage a change in behaviour and lifestyle with a positive outcome? I don’t think she has dementia now at all but I fear that’s where she’s headed if she carries on.

Are you sure she’s not acting like this BECAUSE of early dementia?

Im not sure how you stop dementia happening if its coming? I think there are some medications now that can slow down the decline depending on what type of dementia she might have but they would only be available after diagnosis.

can you get her to see a dr for a check up but let the dr know you are worried about dementia?

She sounds unwell in terms of her mental health. It's a massive adjustment to being widowed, and she sounds very anxious. Would she open up to you about how she is feeling if you ask her? She may need to seek help. I wouldn't jump straight to thinking dementia without considering this first.

Dementia is a brain disease, not a mental illness, and you don't give yourself dementia by having negative thoughts.

That said, she does appear to be experiencing distress to the extent that it impacts on her wellbeing. Are there any services locally you could speak to for advice?

The most important things are company and hearing. So on a practical note, encourage her to go for a hearing test. Offer to accompany her/drive her to the audiologist. Poor hearing is a major risk factor for dementia, as people stop engaging in communication and then begin to deteriorate faster.

The second thing is company. She really needs to be engaging with another person every day if possible, if she's only seeing her friends once a month, then she will become more isolated and less comfortable with people. Does she live anywhere where there is a community she could engage with? Church, volunteering, a charity shop, that sort of thing? Even going into the local school to hear older readers is a great way to get out and about and get that social interaction. The problem is, when someone is getting to the point where they're ruminating and internalising, getting them out is extremely difficult. If you can, engaging together in some fun activities might help give her the springboard to go out and do more things independently.

But definitely the hearing test....

There are links between negative thought patterns and dementia, I’m not going to argue about that. Dementia is mostly lifestyle related and genetics play a small part. As I said I don’t believe she has dementia (she has always been quite eccentric) but I strongly believe that change now could hold it off for some time if not prevent it developing.

I just don’t know how to speak to her about this without offending or upsetting her. She’s terrified about dementia after seeing her parent and sibling die with it, but she prefers to bury her head in the sand rather than find out about the things that she can do now to lessen the risk.

I'm sorry to say that I had the same thought as @Blueuggboots

I suspect her current behaviour could be the start of dementia, rather than 'lead to it'. That type of fixated unreasonable behaviour towards the nearest target (a neighbour or a relative) is a fairly common sign of early dementia. Logic is one of the first things out of the window and it is impossible to reason the person out of it.

Even if it isn't dementia, there isn't much you can do about her behaviour anyway.

Yes I suspect she has some slight hearing loss but again this is a sensitive subject that she prefers to pretend isn’t there. I do include her in fun activities as much as I am able to and encourage trips out, and she does enjoy them, but she needs to be doing more every day. It just seems so infantilising for me to tell her that!

Being widowed can change your brain in really quite negative ways, I am in my forties and I had a very similar outlook on life four years ago, I was angry, isolated, didn’t see people as much as I should have and people around me said my personality seemed to shift.

i did have the self awareness to get myself out of that and I went to the doctors and got help, joined some groups and I now have a little cleaning job where I interact with people every day which is nice.

your mum has to want to help herself and also she could well have the start of early dementia. Unless you speak to her directly and she is willing to go and see her gp what can you do? It must be really hard for you tbh

Dememtia is certainly one of my fears especially as I really struggle to sleep.

If you really believe that negative thought patterns can lead to dementia, then it’s unlikely anyone will be able to advise you. I know that early dementia can CAUSE negative thoughts, triggered by fear and anxiety about what is happening inside the person’s brain.

I am so sorry your poor Mam is distressed. It is so hard seeing our parents age@WeekendInNewEngland. Many people who are physically fit and well and are fully engaged with life, friends, exercise, have hobbies/jobs etc and still go on to develop dementia. I really don’t think dementia can be prevented by any means sadly. My own late DM was very much like your DM when my father died. She had never had many friends anyway but did always like to engage with family had visits and outings with us. She did always sleep well but lost some hearing and lived quite a small life and fixated on things. She lived to her late eighties and never developed dementia.

I have a mother in exactly the same position. It is widely known these days that trauma in this way and stage of life can lead to dementia. Like you, I’m doing my best to help bring my mum out of this state but it’s a constant, difficult, exhausting struggle. Things I’m doing to help -

Forcing her to socialise. I say forcing, because if left to herself she would stay at home, alone, watch mindless TV, and spiral into further depression. I’ve got her into some social groups, U3A, WI and a local choir. She always says she doesn’t want to go, but once there and afterwards she says she enjoys it. She’s yet to make any friends to see outside of the group but has people she sees there regularly and talks to. I’m hoping these new connections will eventually become friends who go out for a meal or theatre, that sort of thing.

Helping her feel safe. My father was her life and she feels scared of everything, everyone, every situation. On a practical level, I’ve gone over the house, added ring doorbell, security light at the back. Mentally, I give her a lot of reassurance, motivation, try to boost her confidence. I find it draining but it does seem to help her.

Giving her new experiences. We’ve done a lot of weekends away - new places, new activities. We’ve done events such as pottery painting, meal in the dark, anything new. This keeps her interested in life, and also gives her something to talk about when she sees others.

Having patience. With her, and with myself!

@Funnywonder
I agree, it's the dementia causing the negative/angry/distressed thought patterns.

It can also be difficult to untangle what is going on due to life events. We suspected MIL had some cognitive issues but FIL was very good at concealing/compensating so it wasn't too noticeable. It was only when he died that it became obvious she had dementia.

Have a chat with her GP and ask the GP to call Mum in for a check up. Get GP to make suggestions. It might be Mum will listen. My Dad would only listen to male GPs..He said female GPs were nurses 🙄

@NewJobProblem you sound like a lovely daughter. However there are plenty of people who stay home alone watching TV and maybe are happy doing that who don’t develop dementia. There are just no easy solutions. If people enjoy being busy and socialising that’s an excellent thing but I don’t believe it will prevent them getting dementia. The thing is we all want to feel that we can control what happens to us. We can do as much as possible to remain mentally and physically healthy but unfortunately still succumb to illness.

I think the stress of bereavement can bring about quite severe symptoms in later life. I have a friend who's mum had a psychotic breakdown after the death of her husband and one of the symptoms was that she thought the neighbours were spying on her, saying things to her, going through her bins and eventually coming in her house - with hindsight, she was suffering auditory and visual hallucinations 😔

I would get your mum to the GP for a check up and go in with her if you can. It might be that she is depressed and needs some medication and talking therapy.

This happened with my dad after mum died and in the early stages we attributed it to grief but unfortunately it was the early stages of dementia. How much his isolation and grief contributed to it is hard to know can you encourage your mum to seek support from her GP as you are worried about her unhappiness and anxiety rather than her memory and other behavioural changes . You can write to her GP and outline your concerns in advance of any contact she has with them. It is really difficult to navigate as denial and in some people paranoia are very much part of it

She’s at the GP quite often as she’s also developed anxiety around her health (started around Covid but worsened after being widowed). She has told me she’s not interested in talking therapy as she tried it before years ago and it didn’t help. She is quite rigid and stubborn in her thinking.

I don’t have any hope of the GP identifying any cognitive changes as my aunt was very obviously affected by dementia but was never diagnosed until it appeared on her death certificate despite many gp and hospital visits and tests (which she failed but was deemed ok!). My DM has nowhere near the level of mental change my aunt had. She is independent and able to do anything she wants.

I will try to suggest she gets involved in some things like U3E or volunteering.

Dementia is mostly lifestyle related and genetics play a small part.

I'm sorry that you're struggling with your mum. As you both move into the stage of life where she is an elder, and a grieving one at that, it may help you to learn more about this disease which you are obviously worried about.

Your statement is incorrect. Dementia is caused by protein accumulation in the brain and is a physical disease that appears to have a genetic element. The biggest risk factors for dementia are being over 70 and being female. Around half of dementia cases are thought to be exacerbated (not caused) by what are called "modifiable risk factors", around half of which are outside of individual control eg to do with environmental or wider health issues, and a couple of which (smoking, drinking alcohol excessively) are to do with personal behaviour. "Lifestyle" choices such as watching TV or arguing with neighbours, do not cause dementia.

Your mother's change in behaviour is not going to cause dementia. It is though indicative that she is in distress which I hope you can find support for for her. It could be that the distress is caused by brain changes brought about by dementia - her age and sex put her at risk of this. All the more reason to investigate support services locally, perhaps by contacting her GP and explaining your concerns.

Yes, I had his with my mum. After my dad died, there was the expected grief and huge adjustment, so it was natural to assume that this big horrible life event was causing problems such as depression and loneliness, coupled with the understandable fear of living alone. And that all these things were the root cause of her forgetfulness and paranoia. It was all very low level for a few years, but the feeling in the pit of my stomach was telling me that there was more going on. And sadly there was. Her Alzheimer’s got worse in these sudden ‘dropping off a cliff’ episodes, after long periods of relative stability. I watched my friend in denial about her mum, just as I had been. I think sometimes we need a period almost of denial in order to adjust to what is inevitably coming down the road.

https://www.ucl.ac.uk/news/2020/jun/repetitive-negative-thinking-linked-dementia-risk

I wonder if she would protect herself a little bit. After my Dh died I switched to listening to Radio 3 in the morning because it is so gentle and the news headlines are brief and presented calmly. For a very long time that was the most news I consumed. If she would switch to Talking Pictures TV and socialising - U3A and WI are the best things ever- she will be more kind to herself all round.

I would personally read the riot act on hearing and insist she goes for a full checkup. I have done with my own parents, and now they are both wearing aids, their lives have improved substantially. It's so critical that I don't think it's something to be gently gently about. But I recognise it all depends on family dynamic and my family have quite a direct approach about medical stuff.

I wonder why you are so focused on this one small potential risk factor which is itself part of a small group of potential risk factors none of which are in and of themselves a standalone cause of the disease.

I think (from personal experience) sometimes it isn't the bereavement that causes the decline towards dementia, it's the fact that the person who died was covering up and mitigating many of the symptoms that their partner was experiencing.

When they are no longer there, the remaining person appears to suddenly become much worse, but sometimes they haven't - it's just that there's nobody there hiding what's going on and sorting out problems.