While there are no definitive guidelines for when to move a loved one to dementia care, you can be on the lookout for signs that it may be time for memory care or assisted living.
“Part of the problem is that people set arbitrary guideposts. They’ll say that they will move their parent or spouse if he or she forgets their name, or forgets how to toilet, but it’s possible that your loved one won’t experience those changes,” says Michelle Toft, MSW, M.Ed, director of Memory Care Programs with Cypress Home Care Solutions in Phoenix, Arizona.
Meanwhile, you and your loved ones might be hanging in there to try to help care for someone with dementia at home when they – and you! – could benefit from moving them to dementia care.
Signs It May Be Time For Memory Care
Be on the lookout for any of these signs that it may be time to move to a memory care facility:
1. Your loved one with dementia isn’t safe at home.
“The main reason to move out of a home to assisted living is when there are not enough resources to safely care for the person with dementia at home,” explains neurologist Douglas Scharre, MD, director of the Center for Cognitive and Memory Disorders at The Ohio State University Wexner Medical Center.
The experts we consulted recommended taking a look at these safety issues to assess your loved one’s situation:
- Is your loved one missing medication doses, or taking too much medication?
- Are they eating regularly? Or do they seem to be losing/gaining unusual amounts of weight?
- Can they store and prepare food safely?
- Is your loved one physically aggressive to you or others?
- Has your loved one fallen recently? More than once?
- Is your loved one wandering and/or forgetting where they are when out of the home?
- Is your loved one leaving burners on if they try to cook?
- Is your loved one driving even if they have been told not to?
- Has your loved one been victimized by a financial scam, or are they vulnerable to that?
- Do you suspect that your loved one is in some way being physically harmed by a caregiver?
2. You’re getting burned out.
“Burned out” is an umbrella term that encompasses a lot of difficult situations for care partners. Some become physically exhausted because of their loved one’s needs, and because their own health suffers. Others become emotionally worn out, socially isolated, or feel that they are losing themselves.
Guilt also contributes to burnout, says Toft. If you’re locked in a cycle of feeling stressed out, angry, or poorly equipped to care for your loved one, and then feeling guilty for having those thoughts, it’s time to look for dementia care. “Guilt is what we should feel if we’ve done something wrong,” says Toft. “Feeling angry that your loved one has dementia or wishing you could go out with friends is not something to feel guilty about.”
3. Your loved one with dementia is bored.
“When your loved one is constantly following you around, asking what you are going to do, they need more stimulation,” says Toft. She points out that memory care communities have activities specifically planned for people with dementia, and also allow people to be with others who are in a similar situation.
“It’s about having meaning and purpose in their day,” she says. Don’t feel badly if you aren’t meeting this need any longer. “Caregivers can be so burdened that the person with dementia at home is getting no stimulation and their decline is faster,” says Dr. Scharre.
Steps For Researching Memory Care
Knowing that you have to start looking for dementia care is only the first step in a lengthy process. To help you locate memory care facilities near you, Caring.com provides a comprehensive directory of memory care communities nation-wide. There you can find details about the care that different communities provide as well as thousands of consumer reviews.
We’ve outlined some additional steps you can take to aid your research:
1. Connect with the Alzheimer’s Association.
Your local Alzheimer’s Association can provide information about resources – and perhaps more importantly, emotional and social support for you as you go through this process.
2. Start looking for memory care early.
Toft recommends researching communities in your area as soon as possible, so you do not have to make a decision in an emergency situation. Know that if you choose an assisted living community without memory care, you might be facing increased costs or a move to another community later on.
“Make sure you evaluate the facility's activities program as that will provide important brain stimulation to the patient for better quality of life,” says Scharre.
3. Hire a geriatric care expert.
There are a number of professionals who specialize in helping care partners research assisted living options. Toft points out that the advantage to hiring someone to help you and your family find a good match can make difficult conversations easier, since they can facilitate discussions around the move. Start your search for assistance with the Aging Life Care Association.
4. Consult a lawyer.
Ideally your loved one and family will tackle the legal and financial planning issues soon after diagnosis, says Pasquale Fonzetti, M.D., Ph.D., director of Memory Evaluation and Treatment Service (METS), Staff Neurologist at Burke Rehabilitation Hospital in White Plains, New York. He advises that a person with dementia can and should be involved in outlining their wishes for care as dementia progresses.
This process should provide care partners with powers of attorney and health directives that can help when it is time to make a move. If you do not have these, and your loved one is resisting a necessary move, you have two choices: (1) invest in a web of paid and volunteer care at home as well as day programs or (2) hire a lawyer to facilitate the legal paperwork needed to give you the power to make decisions for them.
5. Learn about dementia.
“There are certain things that happen with the disease no matter where your loved one is living,” explains Joshua Grill, PhD, an NIH-funded Dementia & Alzheimer’s disease researcher who is also the Co-Director of the Memory Impairments and Neurological Disorders (MIND) Institute at University of California, Irvine. Understanding how dementia affects your loved one will help you know how to handle situations you are in together. See Caring.com's articles on navigating dementia & Alzheimer's issues.
Tips to Make the Move to Assisted Living Easier
If your loved one is undecided about moving to an assisted living community, invite them to make a few visits for lunch or to attend other events with you at the one or two places you’re looking at. Making these activities fun and social can increase warm familiarity with the communities.
Jytte Lokvig, author of Alzheimer's A to Z: A Quick-Reference Guide, has this suggestion, "Ask the staff to pair you with one or two other residents who are outgoing and social. Don't mention to your loved one that you're planning for her to live there. Instead introduce her to your table mates with something complimentary about her. An example: 'This is my mother, Sarah. She is a wonderful cook.' After a few more visits, you can suggest that she might want to spend more time with her new friends. You can give her the 'good news' that they have a really nice room where she can stay for a few days."
People with dementia who do not want to move permanently can sometimes make the transition more easily if you tell them the move is temporary and for a practical purpose. For example, says Diane Kibbin, director of assisted living at OceanView, “You might say that they need to be out of the house while it is painted, or that they have to go somewhere where some aspect of their health can be properly taken care of for a while.”
Typically, she explains, families will make all the arrangements, select and decorate the new room or apartment in the memory care facility, and work with the staff so that everyone knows what excuse has been given for the move. Once your loved one is engaged in their new community, they often accept the permanent situation, she says.
Lokvig adds, "Keep your tone joyful, as hard as that sounds and bury whatever guilt feelings you may have. It may be hard for you to use 'loving lies,' but keep in mind that telling your loved one the truth would be unnecessarily hurtful."
Once your loved one has moved in, Lovig suggests making your first visit short and sweet. "Keep the conversation really positive. She'll likely ask you repeatedly when she's going home. Avoid telling her that she's now living there, rather divert her by talking about her new friends, activities, and food." Stay in touch with the staff. If the staff reports that she's agitated after your visit, you might want to give your loved one more time to adjust before resuming regular visits.
Ultimately, says Fonzetti, the decision about moving to dementia care should be a team decision. “The only guideline is to make the decision with your team, which includes the person with dementia, your family, and their doctors,” he says.