Relationship counselling and dementia

July 6, 2018 11:28 PM

My father has dementia. He lives with his long-term partner but they are planning to separate because his dementia is causing arguments. He's wondering whether relationship counselling might help them. Have you any experience of relationship counselling where one of the couple has dementia? Is there any research about it? Would some forms of counselling be more likely to help than others?

Other information: they both had difficulty adjusting to his diagnosis a couple of years ago. They are arguing a lot because of his forgetfulness and her resulting irritation. He is also getting more solitary and less able or willing to do things with her.

We are also exploring strategies to help him be less forgetful. I'm not too hopeful that they will work. He does a lot of note-taking but it does not seem to help much. His partner may also consider counselling for herself.

We are in the UK. They are aware of local services for people with dementia and their carers, but their experience of them so far has been that they are for people at a more severe stage, and have not found them helpful.

posted by anonymous to Human Relations (9 answers total)

Yikes. Dementia is progressive and incurable. Perhaps counseling would help them articulate some feelings but your father will not be able to make long term changes to his behavior if that's what his partner is hoping for. I would recommend you check out a support group at least for a few sessions to get a realistic picture of what dementia means. I'm sorry, I get it, my mom has dementia and it's really tough.
posted by latkes at 6:59 AM on July 7, 2018 [2 favorites]

Your question reminded me of an NPR story about a woman who has dementia and how she and her husband are coping. It doesn’t directly address your question but they do have a podcast and it’s possible that it could be a resource.
posted by bunderful at 7:03 AM on July 7, 2018

Unfortunately, it sounds like your dad and his partner are in denial. The only way I could see this being useful is if the counsellor used the time to go over the expected outcomes for dementia patients and how that changes their relationships. But that's not the relationship counselling your dad is hoping for. I'm very sorry he is going through this--it is incredibly difficult.
posted by hurdy gurdy girl at 7:42 AM on July 7, 2018 [1 favorite]

Is she willing to try therapy or is this your dad's hope? She is saying that she can't handle being in a relationship with a person with dementia. I think it would be best to listen. Dementia is awful and it's going to get worse for your dad. If she can't handle his forgetfulness now, I don't see how she's going to be able to deal with it when he get worse. I watched a friend's mom go through it. She became unrecognizable. My friend and his brother cared for her. His brother was able to handle it, my friend was not. I felt deep compassion for her, but being around her was very irritating. It could be any of us one day, but I learned that I could not do what my friend's brother did.

If she wanted to learn coping strategies, then I'd say that she should try individual therapy, but it sounds like she wants to end the relationship. Trying to force it could lead to future abuse. This is an all around sad situation.

I'm in the US and our laws are different than British laws, but if you were here, I'd recommend talking to a lawyer to plan for his future care and estate.
posted by parakeetdog at 8:57 AM on July 7, 2018 [1 favorite]

Research wise, I have not read anything specifically related to relationship counseling when one person has dementia. Support groups for him and his partner could however be helpful.

I agree with Stoneweaver that a miserable and reluctant caregiver is not going to be helpful for either of them, and she has the right to choose whether or not she stays. However, if his partner has interest/motivation to stay together I would strongly suggest she access some educational resources on dementia. Research does show that it is very helpful for caregivers to gain a better understanding of the causes behind the person with dementia's behaviours. Understanding what it's like for that person can change one's perspective and how they feel about "annoying" behaviours. Ways to manage problematic symptoms and caregiver skill training is also very helpful. There are lots of online resources that are accessible; one interesting little resource I recently came across is a VR app showing what it is like to live with dementia.

I would also strongly recommend that he (and his partner, if they stay together) contact their local Alzheimer's Society. They have excellent resources and can provide some one on one support. I would recommend dementia-specific support from experts in that field rather than traditional counseling.

Best of luck to your father and his partner, and feel free to memail me if you want further information on literature or resources.
posted by DTMFA at 9:55 AM on July 7, 2018 [2 favorites]

I would also like to add that I can empathize with their feelings that many supports are better suited for people in later stages of dementia. This is a problem with dementia related services is most areas. Given this, one-on-one support might be more helpful for now than support-group settings. I would suggest seeking support that can be as tailored as possible to their situation.

One more thought is that support wise, the more people your father has who are part of his network the better. Even if they stay together, anything you and other family can do to support him (and her) will help.
posted by DTMFA at 10:13 AM on July 7, 2018

I have questions. I'm not keen to speedbump that it's not exactly safe for them longterm. Their needs are both acute and different. I imagine deep down they are both terrified.

Does she want to exit this relationship? Is it safer for her to exit if he is increasingly angry? Does your dad have longterm plans in place for his care?

Those seem like the right questions here.

First step might be to address any paralyzing fear, and if that's not possible to safely do, then negotiate a situation where they will soon live apart to deal individually with their situations.

No rec's to resources, but that would be my outline for a plan going forward.
posted by jbenben at 11:22 AM on July 7, 2018

Mod note: From the OP:

Thanks for all the responses. To clarify, my father's partner does not want the relationship to end and is totally up for relationship counselling. My father is not so positive about either.

I talked to my father today and he told me some things he is unhappy about that he has not told her - for instance that he is doing a lot of decorating and DIY in the house, which is her house, and feels unappreciated. What I was thinking is that relationship counselling could be a place in which he could be supported to raise things like this with her, and she could similarly raise some of his behaviours with him - some of which may be dementia-related and need specific support and some may not be. I totally understand that his disease means that there are some things he can't change, but he does have some control over his behaviour as is clear from the way he talks about the decisions he makes. It may be that she does need to recognise that she can't cope in this relationship given my father's health issues (one of my thoughts was that counselling might help her get to that point and support them both to end the relationship in a less bad way), but that is not what she is saying at the moment.

But what I'm taking from your answers is that relationship counselling for people where one partner has dementia is not really a thing. Which I guess is useful to know.

In relation to specific points. I have had other family and friends with dementia, as have my father and his partner, and I don't think any of us are in denial about the progress of the disease, though my father has other health conditions which means it's possible he'll die of something else before deteriorating too much mentally. He has good insight into his dementia compared to other people I have known. His partner's safety is not an issue at the moment. They have investigated the local and national Alzheimer's Society and other dementia support (my father is involved in dementia advocacy and patient-led initiatives, and they have both taken part in research) and have found what has been offered actively unhelpful so far.

Thanks again.

posted by restless_nomad (staff) at 3:13 PM on July 8, 2018 [1 favorite]

this might be helpful.
posted by bunderful at 3:47 PM on July 8, 2018