Craving Connection: Why Activities Should Be At The Forefront Of Dementia Caregiving By Kristina Lubofsky

By Kristina Lubofsky

My grandmother was diagnosed with Alzheimer’s disease just a few weeks before she lost her husband to the very same disease. In fact, she returned home from a psychiatric rehab facility just three days before her love of 64 years passed away. Afterward, she was confused, lonely, grieving, and bored. 

One day, we found her watching boxing on TV. My sweet grandmother, whose former hobbies were knitting, baking, and reading romance novels, was seated in her favorite armchair watching two men beat the crap out of each other. This was not my grandmother. She was just sitting there, blissfully unaware, her mind completely unengaged.

My grandmother is still a person. Her dementia diagnosis may have stolen her ability to cook her favorite breakfast, wash a load of clothes, or follow the plot in her favorite book, but she was still a capable woman. Her capabilities had simply changed.

Such is the case for many people with dementia: they still want, and need, to feel the pleasure and enjoyment in everyday life. They crave a sense of connection and belonging, especially in a world that’s becoming increasingly foreign and unstable. And, perhaps most of all, they still want to feel their identities shine through.

Dementia is not just a memory disease. It affects a person’s whole mind and therefore their ability to remember, think, process, reason, understand, and behave. It reaches deeper than stealing a person’s ability to carry out activities of daily living: in an emotional sense, dementia also diminishes the feeling that they are a contributing member of their community.

In a world that is becoming progressively unfamiliar, people with dementia look for ways to sustain their “normal” lives for as long as possible. But when caregivers step in to take over assisting with activities such as cooking, cleaning, showering, bills, transportation, medical appointments, and more (the list never ends), it becomes difficult to prioritize their loved one’s identity and autonomy. 

Not to mention the emotional impact dementia has on family and loved ones. I have been down the dementia road with three grandparents and have supported many others watching their loved ones go through it too. Dementia is devastating. When your loved one forgets your name after decades of memorable moments together, it opens a deep wound that only worsens as the disease progresses. 

But they are still in there. This is exactly why the autonomy and identity of a loved one with dementia should be at the forefront of decisions made for them. When they cannot live in our reality any longer, it’s up to caregivers to try their best to meet them where they are. Enter: activities.

Activities and recreation are one of the most important, yet one of the most overlooked, aspects of caregiving. It’s not a mystery why activities end up on the back burner; caregivers have so much on their plates and many are sandwiched between caring for both an older and younger generation. Sometimes, there simply isn’t enough time in the day to focus on fun. Sometimes, it’s all a caregiver can do to just get through the day. And that’s okay.

But activities and recreation have an important place in the care of people with dementia. Activities like arts and crafts inspire people with dementia to be creative, tapping into problem-solving and decision-making skills. Completing a puzzle can build confidence and concentration. Word searches can help sharpen vocabulary and memory. Reminiscing over old photos taps into memory and story-telling skills, and in a group, allows the individual with dementia to socially connect. Coloring can have a calming effect, which can help with tricky moods.   

The benefits of activities that work to improve or maintain brain health aren’t limited to just those with a dementia diagnosis. Caregivers can also benefit from engaging in these activities, and social connection only enhances the experience. It makes people with dementia feel a little less alone and makes caregivers feel a little more connected.

If it seems like your loved one with dementia isn’t interested in participating in activities, it’s understandable. They may not understand what their caregiver is asking or they may not be sure if they’ll be able to do it. The following are some ideas that may help caregivers when engaging in activities with their loved ones. 

Getting Started

Many people with dementia lose the ability to self-start activities. It helps to set up the activity and to prompt them to participate. They may not know where or how to begin, but with a gentle guide, they can find their way to doing familiar tasks. 

Avoid open-ended questions such as “What would you like to do today?”. Replace them with something like “Would you like to do a puzzle or color today?” It allows the individual the autonomy to choose what they want to do, even if a caregiver has already narrowed down the options.

Another tip: instead of asking them to do something, ask them to help you do it. The feeling of being helpful is something many people with dementia crave.

Value the means more than the ends

People with dementia experience problems with planning and problem-solving. By focusing on the way an individual is doing something, such as “I love the color you chose” or “That’s a really creative way to do that!”, caregivers can reinforce their participation in the activity, rather than the outcome. 

Minimize distractions

Minimize distractions before activity time. Ensure the area is well-lit, turn off the TV, silence cell phones, clear the clutter, and minimize noise as much as possible (although soft music in the background may be beneficial). 

Introduce a variety of activities

Different types of activities require us to use different parts of the brain, so it’s important to switch up the types of activities. Research has shown that individuals with mild cognitive impairment who participated in multiple types of activities (like exercise, reading, and social outings) scored higher on tests measuring cognitive skills including memory, processing speed, and attention.

Try, try again

It’s okay if they don’t want to participate in an activity! Just because they don’t want to do something today doesn’t mean they won’t want to tomorrow. It may be a matter of changing up the activity to something more suited to their mood. Hang in there and keep trying.

Kristina Lubofsky, MS, is a gerontologist certified in brain health and dedicated to enriching the lives of older adults. After the third Alzheimer’s diagnosis in her family, she founded a company that distributes activities designed to promote learning, better brain health, and quality of life for older adults, via a subscription box delivered each month. As a caregiver, she would bring activities to her grandmother as a way to connect. She knew her fellow caregivers were constantly searching for ways to connect with their own loved ones with dementia and wanted to make these types of activities readily available without adding additional burden on caregivers. Her company, Busy Minds, fills these underserved needs, all while promoting better brain health by targeting different areas of the brain with each collection of activities. You can read more about Kristina’s work and the Busy Minds Box by clicking here.