By care partner, we don’t mean romantic partner, but simply someone who offers support on a regular, ongoing basis. (Caregiver can sound a little one-sided and we want to emphasise the mutual respect you have as adults.) You might be a full-time care partner like a child or spouse, or a visiting in-law, sibling or friend.
If you are a care partner for someone living with dementia, your life has changed too. You can easily feel frustrated by responses that seem uncaring or ‘difficult’, but are actually caused by brain changes.
Then you feel guilty for feeling frustrated – and so it goes on.
Learning about dementia (which takes many forms), and getting support yourself, are both crucially important.
Learn things you need to know about dementia:
- Through a MOOC like the UTAS Learn about Dementia (that’s quite a time commitment, but really valuable).
- Through your local Dementia Society – they will have so much information.
- By following experts on Insta, like @navigatingthecaregiverjourney or @teepasnows_pac (Teepa Snow).
- By reading classic books like The 36-hour Day or Contented Dementia – these should be in your local library!
- If reading’s not your thing, then look for webinars (eg Dementia Australia Expert Webinars)
Get support for yourself as well as your person:
You’re probably looking for support for your person, like finding a Cognitive Therapy provider near you, an Adult Day Activity program, Forget-Me-Not Cafe, Shared Reading at the library… more and more I see providers who offer meaningful activity programs. All of this is wonderful, but what about for you?
Learning about dementia: This will help you with things like patience. For example, when you know that what seem like untruths are actually confabulation, caused by the brain trying to fill in gaps in memory, you can feel calmer, as well as more prepared to respond.
Meeting with other care partners: Important to give you a sense that you are not alone – at a peer support group or meet-up, even if that has to be online, or on social media. There are some online groups where people offload their frustrations, but I’m thinking more of groups where you can get real tips and suggestions (“He refused to have a shower – then this is what worked for me!” “Wow, I tried that too, and it worked!”
Maintaining your own life: Any kind of full-time caregiving can be dangerous for the caregiver, if they neglect their own health and wellbeing (thinking here of the late and much-missed Dolly Parton, who put off medical visits while caring for her husband). I think most care experts will point to the need to maintain your own life, getting into the habit of responding to offers of “How can I help?” by asking, “Could you visit for an hour or two while I go out – I have some great puzzles and books to occupy you both.”
Sometimes people refuse a respite program because they feel they should be able to cope, but it’s so much more helpful if you can get into the habit of normalising respite early on.
Getting advice when you need it: Here in Australia we have a 24-7 National Dementia Helpline, The UK has the Dementia UK Helpline. The USA has the 24-7 Alzheimer’s Association Helpline. Canada has the Alzheimer Society Helpline. Make use of these!
Taking time out together: Enjoying a shared uplifting experience can help you both – like a drive to a historic town, with a Devonshire Tea by the river. Taking another friend along can be super helpful, so your person is never left alone to wonder what’s going on.
Here in Australia there’s a wonderful government-funded retreat program where care partners and their person living with early-stage dementia spend two nights in a serene location, relaxing, connecting and learning. If you have the funds, there are also dementia-friendly holidays or farmstays – even cruises (lots of funds needed here!). Why not search for ‘dementia-friendly respite’ or ‘dementia-friendly holidays’ in your country and location?