Supporting your partner when their parent has dementia

Simon Health
Sep 24
5 min read

When a parent or family member is diagnosed

When someone first learns about their loved one’s dementia diagnosis, it can be quite jarring. Television, movies, even ads from Alzheimer’s charities, constantly tell us that everyone involved is in for a slow, painful march towards an ultimate goodbye. While these unhelpful stigmas are not the truth, dementia can be very difficult for both those diagnosed and their family members and loved ones alike.

Most people are unprepared for what is to come, in terms of their own needs and those of their loved one. They wonder how long they have left with their loved one, if they should immediately look for a care home, what symptoms to expect and when. Sometimes they aren’t sure how to behave, not wanting to treat their loved one as their illness but also wanting to keep them safe. They want to enjoy time with them, but can feel guilty about how much support they do, or do not, give. The unknowns, the anxiety, the guilt, they can complicate what used to be one of the closest and most unquestionable relationships in their lives. They may feel angry that this has happened to their family, a feeling of unfairness towards the world, and a sincere sadness for their loved one being ill.

So how do we support our partners when they are going through this? We may want to leap up to help, to do tons of research and start offering solutions. We may also not know, and shrink into ourselves, or search for distractions.

Having gone through this myself, I’m here to offer some helpful tips in how to be supportive. Every situation is different, and I’ve learned these lessons through trial and error, but hopefully my sharing them reduces some of that error for you.

Ask questions

First and foremost, ask questions. How are you doing? What are you worried about? What do you want to do? The basics can be really helpful, giving space for your partner to share their thoughts and feelings, speak them out loud without judgement, and work through their emotions.

But it isn’t only about emotions. They likely do not know what to do, and are faced with a variety of choices and stresses at each stage of the care journey. Should I ask my mom to stop driving? Do I tell her friends? Will my brother and sister help with her care? Does she need a daily care visit, how do we prevent scammers and fraud? Am I visiting enough, what if I don’t want to see her right now?

These are often practical and important questions, ones to continuously revisit as dementia progresses. We’ve tried to address some of them in a separate blog post (link to 7 things to do), but the answers change over time.

Make sure to keep checking in, continue to ask questions, and try to allow for them to think through their thoughts, feelings, and actions.

Do research

Trying to understand dementia, and the support available, can be both daunting and emotional for those affected. Being a bit more distant gives you more capacity to research into what solutions are available to support, whether that is benefits from the state, digital care support (like Simon) to help coordinate needs amongst family members, therapeutics and quality of life help, or even helping to find community. There are many people going through similar, who can be found both online and in person, and they are a very supportive and understanding group in helping care partners navigate the care journey, and their own emotions.

These communities can also provide advice based on the stage. As symptoms progress, as care demands increase, make sure to do more research, to understand what is out there, and see how you can help.

Give them space

No one wants to feel pitied or pathologized. This is true for those with dementia and true for their care partners. Asking questions is important, doing research is as well. But try not to overwhelm your partner with these things. People with dementia and their care partners both want to live their lives and try to be happy, despite the difficulties they may face. They may not want constant reminders of those difficulties, so try to give space for emotional processing, and space for joy and happiness. Encourage them to take time for themselves, to do the things that make them happy.

Encourage them to talk to their loved one

Sometimes people want to run away from difficult news. They aren’t sure what to do, and it can be troubling to think about.

Given how often dementia is stigmatized, and people with dementia are belittled in popular media, try to remember that they are people too, more than their pathology, they deserve love and happiness like all of us.

In that light, encourage your partner to talk to their loved one about their options. When they aren’t sure what to do, encourage them to ask their loved one what they would like. Do they want a daily visit, do they want to come to dinner or join that vacation? How are they doing? These are simple ways to keep people with dementia involved, to continue to respect their autonomy and humanity.

It can be difficult and scary, but I’ve found in the end that speaking to loved ones with dementia, and the family at large, helps everyone more than it may hurt.

Step up

Now is not the time to shrink away from your responsibilities as a partner. It can demand more of your time, your energy, your emotional support, but that is what you signed up for. Dementia affects 1 in 3 families, chances are you will need some physical and emotional support some day too.

Stepping up looks different for everyone. It can mean less compromise on where you spend your holidays, it can mean spending alone time with those with dementia so your partner can do other things. It can mean the research and emotional support mentioned above. It can even mean taking unilateral decisions to throw away those appliances which keep scaring the s%!$ out of everyone, but which no one will just throw away.

Whatever stepping up may mean to you, try to do it, do it subtly (this isn’t about you), do it quietly (there is no thank you in love), and do it often. Remember your own health and happiness, of course, but don’t shy away from your duties, in sickness and health.

Conclusion

The ways in which we can support our partner going through this care journey are numerous, not likely to be neatly confined to this list.

But based on my own experience, I have tried to give you some personal, practical advice on what you can do. Not every recommendation is right for every situation or every relationship, but don’t be hard on yourself, don’t pathologize or pity anyone, and remember that just being there can be enough sometimes.

If you ever need someone to talk to, or want some more advice about how to be supportive, you can always email me at daniel@simon.health