Assisted Living Facilities and Lewy Body Dementia

Often there comes a time when it’s so difficult to help and take care of someone with Lewy Body Dementia (LBD) that family must move the person to an assisted living or memory care facility. In my Dad’s case, he chose to go because my Mom was having a difficult time dealing with his disease and it was hard on both of them. Dad knew his disease was progressing and he felt it was the best thing to do. If you think it’s easy to find a good facility, think again. No matter how nice the facility looks, the staff most likely will not be familiar with LBD.

Assisted Living vs. Memory Care

Dad was originally assessed by the facility and told the assisted living section of the facility would be appropriate for him. The assisted living apartment had a small efficiency kitchen where he could keep food and snacks, participate in all the activities, and he would be allowed to go on outings sponsored by the facility. He would also be required to go to the bathroom unattended and find his way to the dining room unaided. Unfortunately, a week after he moved in, the facility missed some of his medications (we paid extra for a nurse to give him the medications). I don’t know if it was being in new surroundings or missed medications, but he went downhill to the point the facility wouldn’t allow him to live in assisted living anymore. The biggest problem was one night he wandered from his apartment to the front entrance hall. Wandering is not allowed in assisted living because he might leave the property and put himself in danger. Also, this facility was not willing to help him if he was lost finding the dining room and he was having trouble with remembering the location.

Memory Care/Dementia Care

Memory care is what the industry calls the dementia ward. I have only seen a few facilities but primarily it is a lock-down security situation so residents can not leave, and the employee-to-resident ratio is higher than assisted living. In my Dad’s facility the residence had a private room set up like a hotel room with a bed and dresser. We added a mini-fridge so he could keep snacks. (My Dad loved food and snacking, although he wasn’t overweight.)

The Memory Care Director said she was familiar with LBD and prepared a special activity plan for Dad. In reality, there was no special plan and Dad had no special activities; he participated in the regular activities with all the other memory care residents. Activities are designed based on the majority of residents’ abilities. One activity had everyone sitting in a chair in a circle and passing a ball between them. Another activity was a group sing-a-long. The main activities were watching TV and walking around the hallways.  Dad was often bored because on his good days he could play a simple card game and engage in high-level conversations.

We gave each of the staff printed information from the Lewy Body Dementia Organization website so they could become more familiar with the fluctuating dementia. The staff was very friendly but overworked and really didn’t have time to plan anything special for one or two residents. I think this is a common problem.

The Importance of Exercise

Exercise is extremely important for both dementia and Parkinson’s symptoms. It improves cognitive functioning, reduces stress and keeps limbs from stiffening up. Other than very simple movement exercises and walking the hallways, no exercise was offered at Dad’s facility. They had a physical therapy stationary bike set up in the office and sometimes they allowed Dad to go on the bike for 15 minutes under supervision. Dad loved the challenge of going farther in his 15 minutes and he set goals for his next session. Eventually we hired an outside person to come and pickup Dad to go walking with him and his dog several times a week. The bike and the walks outside where critically important to Dad’s overall well being.

Hiring Outside Help

No matter how attractive the facility looks, it is limited in it’s scope of care. Legally assisted living and memory care facilities are only required to provide basic needs and care; everything else is considered a luxury. Hiring outside help is the best way to insure your loved one with Lewy Body Dementia is continuing to be stimulated, challenged and engaged in life. At first we placed an ad on Craigslist and got calls from several potential helpers who I think would have worked out. Fortunately, we were lucky to find a friend of the family who worked with Dad several days a week for $10 per hour.

A Facility is Not an Easy Answer

My Dad moving to a facility did not necessarily make his life or our lives easier; it presented a different set of problems. My sisters live near the facility and were most involved in handling the calls from the staff, monitoring my dad’s living conditions and needs, visiting my dad, etc. The bottom line is these assisted living and memory care facilities make it sound like a perfect solution but it simply isn’t.

Please Contribute to the Lewy Body Dementia Organization Through Our Walk

As we walk the 500-mile Camino de Santiago, we will be handing out information and talking to fellow walkers about Lewy Body Dementia to help create awareness. Most people with the disease are misdiagnosed and not medicated appropriately to slow the progression. All donations go directly to the Lewy Body Dementia Organization for education and research. You can DONATE HERE–Crowdrise–Walk with Lewy!

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