Tips for Family Members and Caregivers of Persons With Dementia
By Eric Worley, Client Services Specialist, Dementia Care Specialists
Think about all the ordinary activities that take place in your daily life: talking on the phone, running, working on the car, fixing a meal. Now think about bigger events: attending a wedding, travelling, giving a speech. These are activities that we mostly take for granted. Sometimes, we even think of them as bothersome or chores. Imagine how you would feel if they were all stripped from you, leaving you alone, confused, and frustrated. Think about your life without your life.
For people living with Alzheimer’s disease and related dementias (ADRD), this is their reality. Some, if not all, of their favorite pastimes are unavailable to them. They have energy still coursing through their bodies, but they’re unable to express themselves the way they could in the past. As family members and caregivers, it’s important that we think outside ourselves and consider the consciousness of our loved one or clients. How would we feel if we used to go for walks outside every morning, but are now limited to walking indoors?
Tips for Care Partners
When I worked in activities, one of my challenges was getting all my residents to be engaged in an activity. While I worked on a memory care unit, I struggled to come up with activities that were appealing to everyone. What that left us all doing most days were basic games and sing-alongs. But once I started thinking outside the box and getting to know our residents, I started to spark their interests. I learned things about each resident that allowed me to get their attention and successfully engage them for anywhere from five to 30 minutes.
I was able to match residents up in smaller groups based on their interests and have shorter, but richer interactions with them. Instead of spending an hour playing bingo with only four out of sixteen people participating, I would spend fifteen minutes with each group of four on an activity specific to their cognitive level and interests. I began to see a drastic improvement in the overall mood of the unit. It takes time to figure out what each person is interested in, but once you make that connection, you will see an improvement in not only your residents' quality of life, but in your own morale as well.
Here are some conversation starters that have worked for me and helped me learn about residents’ interests. Feel free to adapt these to your residents and the situation.
If a resident wants to go home: “Where is home? What does your house look like?”
If you have a simple task to do: “Can you tell me if I’m doing this right? How should I do this?”
If it’s a holiday: “What did you used to do for _______?” Also share what you do on that holiday.
If you’re in the resident’s room: “Who’s this in this picture? I didn’t know you used to ______. What was it like?”
If a resident is walking around the unit: “Can you help me find my ______?”
Download a life story questionnaire, and complete it with your clients and/or their loved ones. This will provide you with good information as you get to know the person.
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Tips for Family Members
Family members of persons with ADRD have the added complication of the person they’re caring for being close to them personally. There’s a dynamic shift that occurs when you move from being just a family member to being a caregiver. It pains me to hear people say, “That’s not my dad anymore.” The man you’re helping is your dad; you just have a different relationship with him now. It’s hard to let go of how you want him to be, and it’s tough to accept who he is now. But the sooner you start working with him, the sooner you can get to the next phase in your relationship.
Just as your relationship changes when you grow from a teenager to an adult, it’s changing again. It’s important to remember that even if he doesn’t know you, you know your dad. Use that knowledge to present him with objects from his past to form that new connection. To him, you’ll be a new best friend. Get to know him all over again. Listen to the stories he’s told dozens of times, and react like it’s the first time you’ve heard them. As you notice changes, you’ll have to adjust your approach accordingly. There is no hard-and-fast rule to engaging your loved one, but don’t be discouraged if something doesn’t work. It takes trial and error to learn a new skill, and this is just like any other skill. It will take time. Be patient.
Here are some tips I’ve shared with family members to help them make the most of their visits.
Be patient. As frustrating as it can be for you, imagine what your loved one is going through.
Reminisce. New memories may be hard to talk about. Ask your loved one if she remembers certain events from the past.
Keep visits positive. Don’t complain to your loved one. It will make him feel better if he knows you’re doing well.
Go with her present reality. If she says she’s waiting for your dad and he has passed away, don’t tell her that he died. Say you’ll wait with her, and change the subject.
Never leave upset. If your loved one is having a bad day and doesn’t want to visit, don’t take it personally. Tell him you love him and leave with a smile. Tomorrow’s a new day.
Please share any personal success stories you have had in reaching a person who was once deemed unreachable, or tell us about any current challenges you’re facing. We are all here to lend a hand. Join our dementia-care community on Facebook
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