Alzheimer's and Dementa Caregiving, Dementia Caregiver Stories

Activities

As dementia progresses, people need help structuring their time. That can be a lot of work.

Things to know

Finding activities that align with your Loved One's interest and capacity can be hard.

Group or paid activities may not align with your budget, schedule, or Loved One's interests; this can be especially challenging for Loved Ones with Early Onset diagnoses.

ISSUE

Early implementation of a schedule and routine can reduce stress for people with dementia, and save caregivers time and money.

Your Loved One's abilities and activity goals change as s/he goes from needing prompting to guidance to more direct support.

TIMING

1. Dementia may muffle your Loved One's voice, but they still have preferences; build off of what they love

2. S/he may stumble through an activity they once knew well. You may be sad (that's ok, it's sad!), but just participating may foster joy and purpose.

3. Friends, technology, whiteboards, church groups, and more are all here to help.

A FEW TIPS

How they did it

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ROSE

Age: Mid-30s

Loved One: Mom, Early 60s

Diagnosis: Early Onset

Years Since Diagnosis: 7

Our first line of defense was to keep her routine going as long as possible. She went to her exercise class. We shared it with her instructors. We coached her into sharing her limitations. My dad did a great job of doing that.

 

Eventually, my mother got a little afraid and her life kind of condensed. She just spent a lot of time watching procedurals.  I can't even listen to NCIS or Law and Order or Bones. I hear that music… and I can't. 

 

She had trouble with groups. We used to eat dinner out  as a family. We did a lot of group socializing. Gradually,  that went away. She could not follow conversations. My dad had her pretty well programmed. She would go to choir at the Y.

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TESS

Age: Late 20s

Loved One: Mom, Mid-50s

Diagnosis: Early Onset

Years Since Diagnosis: 5

I use a calendar and a whiteboard to help organize my mom’s time.  The calendar has the month and the daily schedule and that has been really helpful. Her daily white board helps answer the questions she typically has. It says exactly what's going to happen throughout the day -- who’s coming over, what time I get home from work, or things she has been asking about a lot. She doesn't necessarily adhere to the schedule on the whiteboard. That's been a struggle and I'm still working on figuring out better ways to engage her in that.

 

The pandemic has definitely been really difficult, especially socially. For a while, my mom was volunteering on weekdays at a preschool.

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HENRY

Age: Early 40s

Loved One: Mom, Mid-70s

Diagnosis: Alzheimer's

Years Since Diagnosis: 5

We created schedules for each week. She was active and social. She wanted to continue to connect with people. With COVID, she took a decline from March to September, There were less activities and less cognitive connections.  She needs to be reminded of her family members now. She's not able to participate in the conversations. 

 

My dad and my sister, with a care adviser, put the schedule together. We got a full time caregiver. We wanted to keep my mom at home. We got a full time caregiver starting around May or June. She’s not keeping my mom active and showing up with ideas.

 

Before COVID, my mom was on a  schedule. Her OCD came out. We wrote her schedule on a board. She’d say repeatedly “it's Thursday. I’m playing tennis.”

How you can do it

Learn more about how other caregivers have navigated activities

MORE STORIES ABOUT ACTIVITIES

We are building a guide to help you navigate activities. Have ideas on what you would find helpful? Let us know!

COMING SOON -

ACTIVITIES GUIDE