Top Resources for Dementia Care

I started this blog to keep my family and friends up to date on my caregiving journey and primarily to avoid having to tell the same story over and over. I quickly realized it was a great way for me to digest and analyze how I could be a better caregiver. I started to include some practical solutions to common situations.

Today, I work with adults diagnosed with dementia and their families and continue to learn and navigate the caregiving journey.

This year is the fifth year this blog has been named to Healthline’s list of Best Alzheimer’s Blogs. Check out the list of winners and find a host of valuable resources. You don’t have to figure this out on your own. Those of us walking this journey are more than happy to help. Believed. 

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The Angsty Discussion About Moving: Life Care Communities

The discussion about if to move, when to move and where to move is an inevitable topic if you are caring for loved ones with dementia. Most people want to “age in place” and view a move as a huge negative … initially. However, there are many times when moving is better for the individual living with dementia as well as their caregiver — especially for a spousal caregiver.

What I have seen playing out with my family, friends and their families, and clients is that the “move” that created so much angst and difficulty is generally not the last move.

My hope is that knowing that may help you discuss what is really just the best move to make for now.

I’m going to walk through some scenarios in hopes that it will help you and your family make better informed decisions about caring for a loved one. There are no wrong or right choices … just the best choice for your loved ones RIGHT NOW.

Buying Into a Life Care Community

My parents bought into a “Life Care Community” and handed over nearly a half a million so they would “never be a burden to their children.” The Life Care Community model typically offers Independent Living, Assisted Living, Memory Care, and Skilled Nursing options all on the same campus. The idea is that you moved through the system as needed.

The community helps with the activities of daily living (eating, bathing, walking, dressing …) but they do not help pay bills, manage lifestyle desires, cater to medical choices and preferences, or act as personal advocates. Because my parent’s had the belief that moving in meant their adult children would never need to be involved, caring for them was actually harder than it should have been.

At one point the community asked us to petition for guardianship because my parent’s were a danger to themselves and others. We refused and worked hard to manage through their needs while allowing them to retain their personal dignity.

My parent’s were eventually forced out of Independent Living and had to either move into Assisted Living or move out of the community. The smaller apartment and proximity in the community to the action was a big bonus and my parent’s were actually happier than I had seen them in years.

After Dad died my Mom struggled. In this community, the section for Memory Care only had people in very late stages of dementia. My Mom was always moving and needed a community that would give her space indoors and out to move. We moved Mom out of the community they bought into and oddly enough actually paid less monthly for a better care model for her needs.

The good news is that the “buy in” model is fading away. However, before you plop down a stack of money know that the community may not be the right fit for your loved one as their care needs change. In many communities, Assisted Living is filled with many individuals who have mild to moderate dementia. I watched as those that just needed help with dressing and bathing avoided my Mom who couldn’t remember their names or hold a meaningful conversation any longer. For a variety of reasons, the next level of care needs for your loved one may just not be a strength of the community care offered in a Life Care Community.

There are a lot of positives for these communities. Make sure you met with your Financial Advisor or run through the numbers if you can choose to either “buy in” or just pay a monthly rent. The unknown is if an when you may need to leave the community you are moving into. I know it’s a horrible wrench to throw into this difficult decision… but it is a very likely scenario that should be considered before a large financial investment is made.

PROS:
– Integrate and build friendships in Independent Living and have a place and connection for the rest of your life
– Some communities are now letting you move into your apartment and bring the varied level of care to you versus having to move through the different communities.

CONS:
– Have to move when your care needs change and the community doesn’t have the best fit for your needs.
– Expensive. Many now don’t require a lump sum payment. In our area we have a lot more choice and now they have different models for payment.
– It’s often hard to make new friends when you move into an established community.

RECOMENDATION: Ask if the community has a trial period so you can move in and see if it is truly the right fit for you now and can serve needs into the future.

I hope this helps you and your family as you are starting to have these discussions. Witnessed.

Up next, Aging in Place …

Tour the Local Adult Communities – #21

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In my role as a caregiver, I learned that my own community had very few aging life care, memory, or assisted living communities. I toured all three at the time to understand what they had to offer. I learned that the one we liked the most had a really long wait list.

Now that I work with older adults and their families, I have seen that most of my clients are only moving in AFTER there is a critical incident. Sadly, that limits the choices since many of the best communities have long wait lists.

When I start to work with an individual and family because they need help with the day-to-day bill pay, medical care or home upkeep, I always suggest they tour and select one. You can get on a wait list and you never have to move in, but should something happen, YOU or YOUR LOVED one got to choose the place.

For many communities, the individuals on the wait list have the ability to use the community for any short-term rehabilitation or skilled nursing needs.

It is reported that one in three working Americans will become disabled for 90 days or more before age 65 (TMA) and the U.S. Department of Health and Human Services reported that at 65, 7 out of 10 American’s will need long-term care services. That information means that most of us are going to need some help and what we do know gives us more control over future events.

You may find a local 50+ community in the area that might be better suited your lifestyle. There are now a lot of choices you can make for living well.

You have probably received a postcard inviting you to a local community or heard about a nearby senior fair. It’s worth an hour of your time to get familiar with the resources for when someone needs them. Suggested.

How often is a Doctor Available?

As the primary family care partner for my Mom, I was often taking her to a variety of medical appointments. While both of the communities she lived in had visiting doctors, they usually were unable to see her in a timely manner or did not have the type of expertise needed. For instance, after a fall sent my mom to the Emergency Room with a goose egg sized lump on her forehead, we were told we would need to schedule a visit to an Ear/Nose/Throat specialist. For that we needed to travel to a local provider.

A story in The New York Times, Where There’s Rarely a Doctor in the House: Assisted Living, dove into this topic and it is worth reading if you are in the process of looking at a community.

Getting to medical care can be both a time and monetary issue to manage for loved ones that are not addressed by many Assisted Living Communities.

The current communities are having to adapt to the changing demographics and health issues. Most of the Life Care Communities planned on having their residents span a few decades and start moving in when they were in their 60s.

Today, the average resident is over 85 and 70 percent of them have some form of cognitive issue. The community did not plan for their residents being unable to manage their own medical care needs due to cognitive issues. On top of that, there is a cost to get the resident to a doctor in both terms of staff time and transportation. In the metro-DC area, a trip to the doctor for just the transportation averages $110 and this is for individuals who can walk.

When you are visiting, be sure to ask how they deal with the minor health issues like a cold or flu. Do they have regular visits by a doctor and how often? What types of doctors visit? Most communities are going to be unable to handle these issues but it’s better to know before you have an issue than learn about the advocacy and transportation needs after you have made the move. While you may still need to leave to get to a specialist, it is helpful to know they have a robust option for on-site medical care for many of the minor issues that may faced a loved one. Advised.

P.S. Ask to speak with the families of other residents and ask them to share how they have found the doctor. One reader reminded me that you may need to verify what the community sales person tells you.