I'm often asked whether the home is the better environment for caring for someone who is living with dementia, or is senior living and/or memory care the preferred choice? In my opinion, the answer is as unique as the person asking it. In my 30-plus years of experience in the field, there is no right or wrong answer; instead, it once again goes back to personhood.
There are two factors that I often lead with when guiding families to make this decision.
1. Consider the Person and Their Socialization Needs
Are they more social desiring a lot of activity, enjoying groups of people and exposure to new experiences? If an extrovert who has always thrived on socialization, senior living could be a great fit.
On the other hand, if someone prefers time alone or with a few close friends or family members, aging in place in their home could be perfect.
2. Understand the Level of Care and Support
Families need to take a serious look at their loved one’s activity and socialization needs compared with the available resources and supports. The key is to be realistic and prevent mismatches when possible.
Depending on the person's cognitive level/dementia stage, the level of care needed can range from daily check-ins or close supervision to 24-7/1:1 or total care.
Are friends or family able to provide the degree of oversight, supervision or 1:1 care that is needed?
- Think about the physical requirements to provide this care: Is that doable?
- Are the time requirements realistic for those who may offer to help?
What are the financial resources available for care?
- Are there sufficient funds to move into senior living and/or memory care?
- Are there funds to hire home care to cover the total amount of care services needed?
If the answers to these questions tend toward “no,” additional family or other loved ones may be required to help in caring for dementia. In some cases, Medicaid may be available to help for care at home or in senior living.
As I said, a frequent question often asked is whether keeping someone at home or helping them to transition into a senior living community is the best option for caring for dementia. To put it honestly, I don't think one is better than the other. I know it is a very challenging decision to make so without overcomplicating my answer, I suggest that making the best decision begins by (a) factoring in personal preferences and socialization needs, and (b) considering the level of care needs and costs compared to the available financial and care/human resources available.
What's right for one person may not be right for another. Luckily there are options.
I've worked in senior living for years and I believe in its value. But I'm also very excited to see private duty home care services growing. Surveys show almost 80% of elders over 60 say they want to age in place, in their own home.
My Personal Care Support Journey
When my mom had care support needs, primarily due to low vision, difficulty walking, and other medical ailments, she wanted to remain in her home. So, we hired someone to come into her home twice a week to help her do her shopping and banking and take her to doctor and beauty appointments. In addition to helping her get those tasks done, the companion care person was a bright light in what might otherwise have been a boring week. As a daughter with many of my own responsibilities and needs, I provided socialization and care assistance on the weekends. This was a realistic match for my schedule and ended up being a perfect solution.
I do have to say I sometimes felt guilt creep in as I wondered, "Why can't I do it all for my loving mom?" But the fact was I had my own life filled with many responsibilities and I needed time for me. Sometimes I had to literally look at myself in the mirror and speak to myself as a friend advising me to "take care of my mom and myself." This technique helped me move beyond the guilt that so many loving family members take on, and move forward with what was best for all, free of guilt and judgment. And I know I was fortunate in that my mom understood and never pushed me to do more than I felt realistic.
I believe key to our success was that my mom and I interviewed a few home care agencies together and met some of the care staff who were considered as good companions for my mom. We both felt comfortable with who we met, and we were ready to give private duty home care a try—primarily for transportation and community activities—for about eight hours a week. If it involves caring for someone living with dementia and the person can't participate in the interview process and decision, loved ones can do their best to match based upon personality traits, interests, etc.
Caregiving skills are important, but we can't underestimate the importance of emotional connection.
Once it was all up and running, it was easy to see the “win-win” of hired private duty care. I could balance everything in my life and still focus on being a daughter; my mom had a new friend and source of energy in her life who she loved. It also meant that my mom never felt overly dependent on me, avoiding triggering any of her own guilt.
Taking the Senior Living Path
I have many friends, and know many families, who went in a different direction and decided that caring for dementia meant a move into senior living—whether for themselves or a loved one. In almost all those circumstances, the move proved to be as right for them as my decisions were for me. They were able to create the same kind of “win-win” positive outcomes with the senior living choice as I was with home care.
We are all aging and may eventually need supportive care. And if not us, certainly someone in our lives will need care due to dementia or other diseases and conditions. Let's explore this related to caring for dementia.
One in three seniors dies with dementia, so the chances are quite high dementia will impact one's life personally. Not surprisingly, dementia is one of the primary diagnoses seen in private duty home care and it is in the one of the most common conditions in assisted living.
Knowing this, I suggest families and friends prepare by talking about their preferences. Share your wants/needs with your loved ones so if the time for caring for dementia comes, you have made it easier for them to make decisions on your behalf. And ask, as I did a few years back with my mom and again recently with another elder family member, "If the time comes that you need care due to dementia or other reasons, would you prefer to stay at home or move into a senior living community?" Unlike my mom, who wanted to remain in her home, my in-law responded, "I want to be around a lot of people and activities, so I'd like to move into a senior living community." And there you have it. Ask two people the same question and you will likely get two different answers. That’s why I'm thrilled to see such a nice mix of senior living and home care options now available for caring for dementia.
Whichever choice is selected, it is very important to find a quality organization with a good care team. Aging well with dementia means we can stay engaged in meaningful activities at our best ability. We are free from unnecessary drugs or restraints. We are seen as a person first, with our preferences, routines, interests, and background known and honored. This enables the person in care to maintain their function and emotional well-being for as long as possible.
Better health is often a wonderful byproduct of optimized independence and quality of life.
Adapt and Accept
I remember being a 25-year-old occupational therapy student, reading a large textbook about successful aging. While they were a bit unrelatable back then, the words "adapt and accept" stood out. Healthy aging can be facilitated by one's own ability to accept and adapt to the changes we may experience in aging. Now that I'm close to 60 (Yikes! When did that happen?!?), I would wholeheartedly agree that this perspective helps.
But we must remember that because someone with dementia experiences changes in their thinking and reasoning, healthy aging requires more than a change to their own perspective. It requires a care village to envelop the person in the ways that foster their independence.
It is the care partner that needs to adapt, not the person in care.
That care village may be the team working in a senior living community, or the hired private duty care team brought into the home where the person has lived for years. It's about the people who are caring for dementia and interacting with the person each day that makes the biggest difference for someone to age and live well.
When a person is living with dementia, they experience changes in their memory and other areas of cognition. Eventually they begin to have changes in communication and mobility, and gradually become dependent on others to help them fulfill their potential and to meet their needs.
An organization should train their staff to know how to adapt their communication style and adapt meaningful activities to the person's ability level based on cognitive and physical status.
This means doing "with" and not “for” the person. It requires a commitment to this goal, and to mastering skills related to caring for dementia. Because this care approach will optimize and maintain cognition, physical abilities, and emotional well-being.
Care agencies and senior living communities should prioritize these goals throughout their organizations, even down to how their staff provides care. Doing “with” instead of “for” promotes better overall health and emotional well-being and is the type of care we should look for—and expect from—private duty home care or senior living organizations.
Focus on the Who, Not the Where
No matter how well-meaning and loving family and friends are, they can't do it all and remain healthy. Caring for dementia means that at some point the family may need to look outside for care services. Finding the right care support boils down to what the person in care wants and needs for socialization, what their level of care needs are, and what resources and supports they have available.
My advice to families seeking the right fit for caring for a loved one with dementia is to prioritize the quality of the care and the care providers, and understand what options are available to them. Seek care providers who are patient and loving, who are trained to support the special needs of aging and dementia, and who can create a trusting and enriching relationship. Find these qualities, and families will have found much of what is really needed.
Whether caring for dementia is happening under the same roof or a new one isn't the point. Healthy living and better days are rooted in the quality of care, successful engagement in meaningful daily activities, and quality relationships—not in the bricks and mortar.
Kim Warchol, OTR/L, is the founder and President of Dementia Care Specialists at Crisis Prevention Institute.
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