Dementia and Covid

I think we all know that this experience will change how we live, work and play. For many of us that work primarily with older adults, we are seeing how some of the changes may make growing older better for all of us. I look forward to these changes with hope, even though right now, things are more challenging to manage as we adapt to physical distancing.

In the past two weeks, my neighbors and I have all realized that a couple living on our street is in dire need of support. The woman has been knocking on my neighbors door (she is a doctor) at all hours of the day asking for her to check her heartbeat. There has been an EMT visit (the man fell down the stairs), and someone also called the police.

The reality is that none of us can help someone who doesn’t want or recognize they need help. There have been calls to their son who at least helped them set up support from a home care service. There is only so much you can do for your parents who believe they are fine and decline help. The son lives states away.

Yesterday, the home care assistant didn’t know when the woman left the home. When my neighbor took her back home, the home care assistant yelled at her about leaving.

For those of us who are caring or have cared for someone with dementia, we recognize that while they may not remember a conversation, they do seem to hold onto emotions. I am guessing it won’t be long before my neighbors insist the home care assistant gets fired. Who wants someone coming into their home and yelling at them?

We are in a difficult time and many of those performing the duties of home care are not paid well and are putting their lives at risk. However, we also need to find ways to ensure the person in our loved ones homes are trained to help them and I’m afraid that some families are not getting the right support.

So what can you do if your family is in this situation?

  1. Randomly call your loved ones and even have them just leave the call with the line open* so you can hear what is going on in the home and how your loved one(s) are being treated … and how they are responding. If you hear something of concern, reach out to the home care agency and ask for them to address it with the caregiver. I cycled through a variety of individuals before we found the right fit for my mom.
  2. Contact an Aging Life Care Manager. These professionals are trained to help find the right care and be the onsite advocate if you are unable to travel to your loved one. They are not inexpensive, but when it comes to the service and support, I have found they are worth every penny.
  3. Move your loved ones in with you, or move in with your loved ones. There are a few families that have made this choice because they felt it was the best decision for them. This can be a huge hardship and commitment.

    Just know you will make the best decision you can with the information you have. Be at peace with the difficult choices you are and will be faced with. Your loved ones are lucky to have someone in their life watching over them when they need it. Reassured.

*Your loved one doesn’t understand your request? You could ask them to put down the phone and go get something, like an Aunt’s address or phone number because you want to send them a note. Be creative.

Moving Choices: Aging in Place – Part 2 of 3

The first in the series The Angsty Discussion About Moving: Life Care Communities is a general overview of of how they are structured, the reality of the choice, and some things to know and consider if you are looking into this option.

I’m not gonna nove and you can’t make me.”

Now it is time to share some of the common issues and themes I see when a spouse is working to stay in the home with their loved one who needs more care as well as when adult children are helping a parent live at home alone.

In the beginning, it can be less expensive to layer in the care to support staying in their home. However, especially for a spousal caregiver, the care needs and isolation can become overwhelming in addition to the drain it takes on the health of the caregiver. According to the Family Caregiving Alliance, spousal caregivers ages 69 to 96 have a 63 percent higher mortality rate than noncaregivers in the same age group.

Often, the individual living with dementia doesn’t understand why their spouse is hiring outside help. Many living with dementia cannot recognize the necessity that someone help them through their day or the need for their spouse to be off the clock. The caregiving spouse starts to lose their outside connections and support in addition to skipping their own medical appointments and care needs.

Even though the couple is together, I am seeing that they both begin to feel isolated. The loss of a partner can also be more devestating since their partner might be their only engaging social connection. I saw this with my parents.

For those that choose to stay in their homes either with or without a spouse, there are engaging adult day programs for the individual with dementia. Isolation can actually lead to a faster cognitive decline and studies have likened the health risk to smoking a pack of cigarettes a day.

Generally, I see many couples and individuals supported by an adult child living at home alone resist outside support. Unfortunately, about half the time a critical incident occurs and blows up this option and a scramble to employ support occurs. If no prior plans are made, the available options are usually not the best fit. A little support layered in early can be an ounce of prevention and provide more options should care suddenly be needed after an event.

Living at home can also end if an individual living with dementia starts to wander or becomes combative.

The successful couples and families managing a loved one living at home have been able to integrate supports for daily engagement through personal care assistants or the use of an adult day program for the individual with dementia. I know how challenging it can be to start so just ask them to try it out for a few hours and days. Forced changes usually are met with solid resistance.

As a security measure, individuals and families that plan ahead have also selected at least one community that might be a fit if they need to make a change and gotten on the wait list. You can always decline the space when it becomes available but remain in the queue.

PROS:
– Familiarity in the home environment can help someone living with dementia stay independent longer since they have long-term patterns established.
– Expense. If you only need some part-time support or help, or even sign up for an adult day program, the total cost of living is less expensive.
– The individual with dementia wants to stay in their home.

CONS:
– Isolation impacts health and cognitive function in negatives ways. Even introverts (like me) will benefit from social engagement.
– Spousal caregivers have an increased risk of death.
– When something happens, there is no quick solution to provide support (unless you have already planned ahead or gotten on a wait list at a local community).
– Moving after dementia has been diagnosed usually means that learning new things will be more difficult. It can be tougher to make friends and engage within a new community.
– Expense. There is a tipping point when bringing all the services to you can be more expensive.

RECOMMENDATION:
– Make a plan for social engagement and find ways to make it happen. Call your county Area Agency on Aging to find out what resources in your community are availble to help.

There is no right or wrong choice when it comes to choosing the best option for your loved one and their primary caregiver — Just the best option for them and the caregivers when you need to make a choice. Advised.

Up Next, Moving As Needed