Geriatrics
Deciding on where a family member with dementia should be cared for can be difficult. This decision usually involves thinking about home or a senior living community, including nursing homes and assisted living. These different types of communities are described further in the Facts and Figures section. As much as many people want to avoid this decision, there are benefits to learning about and thinking through the options. Some of these benefits are: a) avoiding the likelihood of a sudden or unanticipated move; b) making the necessary plans to maximize the options your family member will have; c) having the time for important conversations.
The goal of this handout is to help you think about these options. In talking about how to think about these options, we are going to refer to your family member with dementia as “your loved one.” We recognize that, for some you, the term “loved one” may not be accurate. You may not have a loving relationship with the person you are caring for. If this is the case for you, when you see “loved one” you can instead substitute “person for whom you are caring” or any other description that is meaningful to you.
Reading through these next sections may be very difficult and may bring up uncomfortable emotions. Please know that you are not the only one to have this reaction. If this happens, take a break and put this down for a bit. But, come back to it. Other caregivers have told us that even when it has been difficult, it has been helpful to read through to the end.
Where your loved one lives depends upon what is best for your loved one
While this statement may seem simple, it can be very difficult to determine what is best because more things factor into this than many people initially realize. We are going to discuss these factors.
On the one hand, many people think that their loved one ought to be in the place where they are safest. However, what is best may not be what is safest for your loved one. For example, for some people it is so important to live at home that they’re willing to accept that they are more likely to have an accident there. You may worry about your loved one falling and breaking their hip, but it’s important to think about whether that’s a risk they would have been willing to take.
On the other hand, what is best for your loved one may not be the same as what they say they want right now. Because they have dementia, your loved one may not recognize all the dangers of staying at home. They may also not understand the burden that their care is placing on you. If your loved one is being picked up by the police for wandering or is refusing the help they need to stay clean, you may decide they need to be cared for in a senior living community to protect their dignity. In addition, some caregivers become so overwhelmed that their own health worsens. This can make it impossible to continue providing the care their loved one needs.
Let’s think about these considerations in more detail:
Your Loved One’s Wishes
Your loved one says they want to be taken care of at home.
If home is providing the best care for your loved one, and care at home meets all of your loved one’s wishes, then care at home is probably the right decision. However, there are circumstances under which, even if your loved one says they want to be cared for at home, home may not be the right option. Here are a few different reasons why it might not be:
- Care at home is not providing the highest quality of care to your loved one. The next section has some questions to ask yourself to see if this is the case.
- Your loved one’s wish to be cared for at home conflicts with other wishes. Has your loved one ever told you that they don’t want their care to be a burden on you? This is something that a loved one might say early in the course of their dementia but then stop talking about. People with dementia can lose the ability to recognize the burden that their care is placing on their loved ones. Think about what your loved one does and does not understand about what you are experiencing.
If they fully understood, would they prioritize being at home or relieving your burden?
If this is a hard question to answer, here are some ways to think about the burdens of caregiving: Is caregiving putting your own physical or mental health at risk? Are you ignoring other relationships?
Caregiving is interfering with your relationship with your loved one.
The challenges of caregiving may make you feel that you are always your loved one’s nurse and no longer their spouse, child, etc. You need to consider what kind of relationship you could have with your loved one if they were living somewhere with staff who are responsible for their care. Would the time you spend with your loved one be different? Would you be able to pay more attention to your loved one’s emotional needs and engage in activities that brought your loved one pleasure? If so, then you need to consider whether an improvement in your loved one’s quality of life may be more important than honoring their wish to be at home.
Your loved one says they want to be taken care of in a senior living community. If this can provide the best care for your loved one, then care in a senior living community or residence is probably the right decision. Some caregivers struggle with the financial implications of care in a senior living community. As we explain further in the “Facts and Figures” section, payment for residential care is not straightforward, and many people are disappointed to find out that Medicare does not cover care in a residence. The costs of residential care may mean that money is spent on the residence that a loved one may have wanted to leave to family members. Because of the dementia, your loved one may not be able to understand this issue. If they fully understood, would they prioritize being in a senior living community or saving their money for other uses?
Quality of Care for Your Loved One
Many people automatically assume that the quality of care provided at home is better than the quality of care provided in a senior living community. This is not always the case. On the one hand, it’s possible that your loved one might not get the attention they deserve at a senior living community.
Depending upon finances, the only option may be a skilled nursing facility, also known as a nursing home. You may not have a lot of choices and may find it difficult to identify a skilled nursing facility that you’re comfortable with. On the other hand, some people with dementia need care that is so complex or so hands-on that they’re better off living where nurses and other trained staff are available around the clock. In addition, your loved one may benefit from being around other people and having more activities than most families can arrange for them at home.
It’s important to talk to people about their experiences with senior living communities in your area. We’ve provided some suggestions below about where to look for information online. Here are some other questions to ask yourself:
Is your loved one spending a lot of time alone and feeling lonely?
- Does your loved one become fearful when alone or lose track of time so think they’ve been alone longer than they actually have been?Does your loved one spend a lot of time sleeping during the day?
If you answered yes, these may be signs that your loved one would do better in a more social setting. Here are some additional questions to consider:
- Do you and your loved one get into a lot of arguments?
- Do you find yourself becoming frustrated and speaking loudly or sharply to your loved one?
It can be easier for employees of senior living communities, who get to leave at the end of their shift, to have the patience to care for your loved one.
Finally, consider one more question: Is your loved one safe at home?
There may be some risks that both you and your loved one are willing to take to be at home. However, if they are at a high risk of being seriously hurt or injured, then the increased oversight of a senior living community may be necessary.
Having read this far, you may be saying to yourself that you can’t really think about any of this without feeling guilty. Let’s take a minute to explore that.
Guilt: Guilt is one of the most challenging emotions involved in decision making about a move to a senior living community. You may feel that you “owe” it to your loved one to take care of them at home or that you would be avoiding your responsibilities if you do not provide this care. You may have even made a promise to your loved one to keep them at home and you do not want to break this promise. It would not be realistic for this handout to tell you that there is a way to take away this guilt, nor should that be the goal. The presence of guilt is a sign of the strong relationship between you and your loved one. This relationship should be celebrated, not taken away. However, it’s important to recognize that guilt may affect your thinking about what is best for your loved one. For example, guilt may make it harder to recognize the ways in which a senior living community may be a better option than care at home. You may underestimate the ways in which it could provide for a better quality of life for your loved one by making them safer or giving them more opportunities to interact with other people. You may also underestimate the toll that caregiving is taking on your own health and the risks that this creates for both you and your loved one.
If you decide that it would be best for your loved one to live in a senior living community, there are ways to help you cope with the guilt. Other caregivers who have faced this decision talk about the importance of having an outlet. With the additional time you have, find an activity that rejuvenates your energy and your spirits. If you have family members and friends who have gone through the decision-making process with you, lean on them for ongoing support and to remind you of the reasons why a senior living community is indeed the best option. If you are religious, you may want to talk to a pastor, rabbi, imam, or other clergy who can help you understand the role of your faith in supporting your decision. You will also need to think about how much time is the right time to spend at the senior living community. The staff there can help you with this. The guilt won’t go away, but you may find that these suggestions can help you live better with it.
Here is one final question to ask yourself:
- Do you think that your loved one can still understand the nuances of what it means to receive care at home versus a senior living community?
If the answer to the question is yes: Make time to have a conversation with your loved one. Talk through all of the “what ifs” (what if they need more hands-on care, what if your health began to decline, what if it was not safe for them to be at home).
See what your loved one says about how burdens on you should factor into decisions about home versus senior living community. This may lead you to decide together about circumstances in which care there would be better than care at home.
If the answer to the question is no:
- Imagine your loved one were magically able to be restored to who they were before they developed dementia. Now imagine that they saw what their life is like now. What would they decide about how best to meet their care needs? Do you think they would decide they should remain at home or move to a senior living community?
- Imagine that they also saw what your life is like now as you provide care for them. Do you think they would still want you to keep the promise you made? Or do you think that they would want you to be less burdened?
- Do you think they would be happier if you found a place for them to live that would be better for both of you?
Facts & Figures about Long Term Care
There are facts and figures you need to know in order to understand how senior living communities provide care, how much they cost, and how they can be paid for. You also need to have information about supports for home care. Finally, you need to understand how decisions are made when a person with dementia can no longer make their own decisions.
There is some planning you could do now, even as you may still be deciding about where your loved one should be. Here is a checklist to assist you. The next section provides you with the information you need to check each of the boxes.