Dawn Smale, a social worker with McCormick Dementia Services in London, Ontario, runs support groups for people in the early stages of dementia. She says that they’re sometimes frustrated by family members who assume they don’t understand and who make decisions on their behalf.
Part of the problem is that individuals with dementia often need extra time to process what they’re hearing. “They’re considering what you’re asking,” says Smale, “but it takes them a lot longer to work it through their brain and then be able to formulate an answer and then get it back out.”
Smale also offers advice to family caregivers. Many of them have a hard time knowing how much help to give relatives with dementia without stepping on their toes. In part that’s because their relative’s ability to understand may fluctuate. “It makes it very difficult [for caregivers] to decide when should I step in and when shouldn’t I,” she says.
Here’s some advice she gives to family caregivers:
- Start with the assumption that your relative can participate in the discussion and that they can understand.
- Be concise when you talk. Say one thing at a time. Be patient. Give your relative extra time to process what you or others are saying.
- Pay attention to whether your relative seems to be following along. Do they say things that show they’re aware of what’s being discussed? Are they voicing an opinion?
- If they appear to be following along, don’t step in and make decisions on their behalf.
- If they don’t appear to be following along, continue to involve them in the conversation even if they’re not able to make a decision. Give them the chance to express concerns.
Here’s some other things she suggests you consider:
- Is there a safety risk? If so, it’s especially important to make sure that your relative understands what’s being discussed and is able to make an informed decision. Otherwise you might need to step in.
- Just because someone with dementia isn’t understanding well enough to make a decision about one thing (e.g. taking a medication) doesn’t automatically mean they’re not able to make decisions about other things (e.g. participating in a day program).
- Have you had a discussion on this topic before? Has your relative’s opinion changed? Everyone is entitled to change their opinion, but does the reason behind the change seem to make sense?
It’s increasingly difficult for people to make decisions as their dementia progresses. That’s why it’s important to have conversations with your relative early on in their disease to give them a chance to talk about decisions that may have to be made in the future. It will give you a clearer sense of their preferences should you be called upon to make a decision on their behalf when the time comes.
There are specific rules in Ontario about who can provide consent to treatment (including personal care) on someone else’s behalf. For more information, read our article, Consenting to treatment: Don’t assume you can make decisions for a relative.