It is difficult to know what to do once there has been a diagnosis of Alzheimer’s or another form of dementia. You likely noticed it for some time before the actual diagnosis. There is often a sense of panic. You can see the money depletion and you worry from the start how you will have the energy for it all. So many decisions have to be made, and remade, but perhaps the first decision you will make will be to take a deep breath and head into your journey with your loved one a day at a time.
You may wonder over the difficult decision of knowing if or when to place your loved one in a facility with a memory care unit. You may struggle to know whether it is absolutely necessary, and you may worry over the quality of care your loved one will receive, along with the ever-increasing cost of that care. This is a very personal decision and only you know what is best for your loved. You know them better than anyone, better than their doctor or other professionals or advisors—though you will seek out and need much advice. You also know what the situation is at home. You know yourself and your capabilities and limitations, and you know what the financial picture is. What you don’t know, of course, is what you don’t know, and this makes the journey so challenging. We don’t know in advance what symptoms will arise, or when, in the changes that will take place. We don’t know how and if we will be able to cope with them.
What we know, those of us who have traveled with a loved one through their dementia journey, is that the entirety of it is very fluid. What is today will not be tomorrow, especially once your loved one enters mid-stage and late-stage. What works today may very well not work tomorrow or even in two hours. It may work again in three days, or never again. Your loved one’s brain is changing, slowly shrinking. As it does so, different areas of the brain lose the ability to communicate with the body. That is the difficult, sad truth of the matter, and as you may have already experienced, what was fine and normal yesterday ended abruptly today and you are faced with a situation in crisis. Still, what to do? Here are a few perspectives.
- Professional recommendations, including the Alzheimer’s Association, note the benefits of keeping your loved one in their home environment for as long as possible. Familiarity is very important to those stricken with dementia and it can be of great comfort to your loved one and be helpful in keeping things easier for you if they remain in the home.
- Some loved ones are manageable throughout their journey and can remain at home with a willing caregiver/-partner. Others with dementia become unpredictable and are extremely difficult to manage and need placement for their own protection and/or because a caregiver or home team can no longer manage them in their home environment. Safety is of especial concern.
- The dementia journey is the great unknown. You can’t predict how it will go. You can only predict that it will end, but you don’t know how or when. This creates in the caregiver/-partner an existential crisis Dr. Pauline Boss defines as “ambiguous loss.” Your loved one is here, still with you, and yet they are also “gone,” slipping further away each day. This also causes grief, and anticipatory grief—the awareness that our loved one is, in effect, dying, but we don’t know when—adds another aspect to the journey. No doubt, caring for a loved one with dementia is not for the faint at heart. It is an unknowable ride through peaks, valleys and plateaus. It includes joy and sorrow. But you can take comfort in the awareness that your loved one’s essence will remain and you will always be able to somehow tap into that to keep your connection with them—even if they forget you.
- Placing a loved one depends on quality of life for your loved one and for you. If you can manage it and keep a reasonable sense of personal balance, then keeping them at home is a good option and the least expensive, though it can still be costly.
- Facility care is not 24/7 watchful care. No facility can watch your loved one 24 hours a day. Activities occur during the day when the facility is fully staffed. In the evening administrative offices close, Activity and Nursing Directors go home; the kitchen closes, and resident care staff become busy with dining room clean-up, showers, and putting people to bed, etc. Your loved one may sit alone in their room or at a table for more than one hour, if they cannot walk. After 5pm, there is little direct engagement with residents beyond nighttime cares and pill passing. This may or may not matter to your loved one, depending upon their stage of dementia and personality. Those in earlier stages might congregate together in front of a Main Room TV or sit with one another in their private rooms or simply wander the halls.
- Caregiving does not end once a loved one is placed in a facility. Of course everything depends upon what you want and what is easier for you. Some people do place their loved ones and engage in tele-care only. This may be for a variety of reasons, including proximity. That’s not my recommendation, but it happens. Things to be aware of in placing a loved one include add-on fees as your loved one worsens. My mother’s total cost for Memory Care only was $298,000 for 32 months of care, including hospice near the end—and she was 30 miles outside the Twin Cities. The closer you are to the metro area, the more expensive it is.
- Staffing turnover and/or shortage can also be an issue. How do you feel about staff turnover, including Administrators and Directors of Nursing, etc.? Who is the Medical Director? A University of Minnesota Study done in 2025, states, “Medical directors are federally required to guide clinical and quality programs in every nursing facility, yet many homes struggle to even identify who fills the role. In 43% of facilities contacted, staff could not name their medical director—raising alarms about accountability and visibility.” To learn more, go here:
These are some of the questions to feel your way through when trying to decide how to navigate the dementia journey with your loved one. Instinct is often the best compass in combination with reliable information. Trust your instinct but also try to gather as much information as possible about any facility. You can get information regarding Long Term Care Survey Results at Leading Age MN here:
www.leadingagemn.org/resources/resource-library/2025-long-term-care-imperative-survey-results
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Resource Links: Occupancy Survey Results - Full Year
2025 Long-Term Care Imperative Survey
The 2025 Long Term Care Imperative Workforce And Financial Survey for Minnesota is a very informative publication that goes over facility and staffing statistics in LTC facilities (esp. post-pandemic).
- Minnesota also has a nursing home report card where you can look at any facility by name: https://nhreportcard.dhs.mn.gov/SearchLS.aspx
- The Alzheimer’s Association has a great resource page where you can look at your options regarding In-Home Care, Activities, Early, Mid- and Late-Stage Caregiving, Caregiver Health and Daily Care planning. They have a Home Health Compare tool, an Eldercare locater tool, and a Community Resource Finder tool. Remember to thoroughly vet any service first.
GO HERE TO FIND ALL THESE GUIDES AND RESOURCES: www.alz.org/help-support/caregiving
- There is also a MEDICARE policy, “Home Health Skilled Nursing Care – Teaching and Training for Dementia Patients with Behavioral Disturbances,” that is currently available in MN
Detailed information about the policy is available on the Centers for Medicare & Medicaid Services (CMS) website. Follow the steps below to access the policy article.
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Visit www.cms.gov/medicare-coverage-database/new-search
- Type in keyword “dementia”
- Scroll down to and click on the policy titled: “Home Health Skilled Nursing Care: Teaching and
Training for Dementia Patients with Behavioral Disturbances,” Article “A52845.” Scroll down to read the Article Text.
Visit www.alz.org/medicare to learn more.
I’ll leave you with this beautiful poem that captures so well the experience of ambiguous loss. Always remember: You are not alone.
Adrift
by Mark Nepo
Everything is beautiful and I am so sad.
This is how the heart makes a duet of
wonder and grief. The light spraying
through the lace of the fern is as delicate
as the fibers of memory forming their web
around the knot in my throat. The breeze
makes birds move from branch to branch
as this ache makes me look for those I’ve lost
in the next room, in the next song, in the laugh
of the next stranger. In the very center, under
it all, what we have that no one can take
away and all that we’ve lost face each other.
It is there that I’m adrift, feeling punctured
by a holiness that exists inside everything.
I am so sad and everything is beautiful.