When I began my journey as an Alzheimer’s dementia care partner, I knew nothing. If only I had known then what I know now.
There are many more resources available than there were even five years ago, and a whole new way of thinking about the disease and the people who live with it is emerging to empower us all.
Here are seven “how to get started” tips based on Teepa Snow‘s Positive Approach to Care:
1) Learn more about the disease
Learn what it’s going to do. Learn what it’s not going to do. Learn the basics. Dementia isn’t just about memory loss. The many forms of dementia are brain disease that impact a person’s capacity to process information and do things. People living with dementia have different life skills. Their abilities change as the disease evolves.
2) See it as a journey
Dementia is not static. Like life, it’s constantly evolving, changing, and morphing into something new. Smart people understand that it’s a journey, and it’s likely to be a fairly long one – more like a marathon and a sprint. You’re not just going away for the weekend – it’s more like moving to a new country.
3) Don’t be a Lone Ranger
It’s hard work being a care partner with someone who lives with dementia. It’s not a one-person job. It takes a team. Care partners need as much support as people living with dementia do. Ask for assistance. Seek resources. Put the oxygen on yourself first. Get an army of help. If family won’t help, find friends who will. If you don’t have friends who will, explore every other avenue you can. You can’t do it alone. Don’t try.
4) Learn “positive approach to care” skills
I know from experience this is one of the most important things. I self-taught myself as I went, but things would’ve been much easier if I knew then what I know now. In particular, the more you know how to deal with challenging behaviours in a positive and constructive way the less stressful and difficult your journey will be.
5) Become a care PARTNER
You will make lots of mistakes. That’s okay. But don’t keep doing something that doesn’t work over and over again and expect to get different results. If something doesn’t work, you need to change what you’re doing, because the person with dementia isn’t going to change their behaviour to fit your needs – you have to change to fit theirs!
6) Find resources
I highly recommend Teepa Snow’s videos many of which are available for free online and some of which may be purchased here. I also recommend the Together in This website which provides streamlined information on many aspects of care partnering. Likewise, Alzheimer’s non-profits around the world also provide valuable information and support.
7) Learn the art of letting go