When you're a family caregiver for someone with Alzheimer's disease or a related dementia, you're constantly needing to find new ways to manage care. What worked yesterday doesn't work today, and what didn't work last month might work now. The progressive nature of the disease never lets you rest knowing that you've implemented the best practices in dementia care. Best practices are a moving target, based on your loved one's capabilities at any given time.
Some of these tips are exerpts from our eBook "Living Well with Alzheimer's Disease." Most of them are designed for early to middle stage dementia. Later stages may need a more complex set of tools.
- Encourage your loved one to do as much as he can for himself, for as long as he can. This will help him feel good about himself and maintain his dignity and confidence.
- Put yourself in her place, literally: have someone give you instructions for an ordinary task in a language you don’t know; you’ll have to tune in to non-verbal cues to understand what they want you to do. Have someone spoon-feed you or brush your teeth for you. These are all routine experiences for a loved one with AD, but most of us have no idea what it feels like.
- Rather than doing things for her, do things together, such as folding clothes or cleaning up the kitchen after dinner, to help her feel she is still useful and involved. When she misunderstands a sound or becomes agitated, respond to her with compassion, then help her refocus her attention elsewhere. Correcting, reasoning, or aguing with someone who has trouble thinking is ineffective and can escalate the problem.
- Provide lots of small pleasurable experiences during the day: give her foods she loves, play a recording of a song from her youth, turn on her favourite game show on TV. Research has shown that the beneficial effects of the endorphins released when the pleasure centers of the brain are stimulated remain long after the event itself is forgotten.
- Who he was at a fundamental level will not change. If he always liked classical music, he probably won’t want to listen to country music now. If he’s always preferred a quiet evening reading, the blare of the television won’t be relaxing now. Some changes could even increase his anxiety levels and prompt unwanted behaviour.
- Sticky notes are your friends. Place them on the cabinet to remind her that cat food is on the left and people food on the right. Stick a list next to the outside door to remind her to take her purse, phone, and coat.
- When a more complex task becomes difficult, break it down into small steps and write down the steps on a list. Keep it where she will see it:. For example, a list above the laundry equipment might contain the detailed steps to run a load.
- As brain function declines he may have difficulty putting his needs into language. Try to anticipate some of the most basic needs - food, toileting, physical comfort - and offer them before the lack becomes a problem: prepare a tempting snack a couple of hours before the next meal, remind him to use the washroom several times during the day, bring him a sweater in the afternoon as temperatures outside begin to fall.
- Offer easy-to-eat foods at frequent intervals, like sandwiches cut into small triangles, potato nuggets or french fries, chicken wing drumettes, or pre-sliced fruit and vegetables. Offer one or two selections at a time. Sometimes what she loved before will no longer taste good to her. You may have to experiment with different foods to find ones she likes now.
- Sometimes visible reminders help better than written words: in the bathroom, his toothbrush on the counter helps remind him to brush his teeth; laying out the clothes he chose with your help last night, in proper order, reminds him of the order in which to dress.
- In a restaurant, perhaps she can choose what she’d like to eat, but you might need to order for her. Or perhaps you will need to escort her to the bathroom and back to the table.
- When he cannot remember how to tie his shoes, you might buy slip-ons, shoes with velcro closures, or buy bright, corkscrew laces that turn his shoes into slip-ons.
- Play along with her fantasies. If your mother thinks you're her sister and they have (had) a good relationship, be her sister when you're with her. You can't change how she thinks, but you can affect how she feels.
- As his abilities decline and he needs help with personal hygiene, there are many ways to maintain his privacy and dignity. Use a shower chair and cover the parts of the body not being washed at that moment with a towel. Let him wash his private parts if he is able. Change one item of clothing at a time to keep most of the skin covered, and look down or away while pulling on undergarments. Brush your teeth and comb your hair alongside him to help him remember how it's done.
- To help manage wandering, try using a velvet rope and stanchions, reminiscent of a luxury theatre; it implies a gentle request rather than an in-your-face command not to go there. Another deterrent is to place a square of black carpet in front of exterior doors. This apparently looks like a black hole and many with AD will not step onto it.
- Say yes to help. Much of our own image of our worth is tied up to the work we do. Caregiving for a loved one who has dementia is more than a full-time job, it's 24/7/365. You can't do your job well if you're overwhelmed, stressed out, and exhausted. Asking for caregiver help is not a matter of swallowing guilt or pride, it's a practical step to give your loved one the best care possible.
To learn more about caregiving to someone with Alzheimer's or dementia, read our eBook: