If you’re caring for someone with dementia, you probably hope to keep them at home until the end. After all, at home, they’re surrounded by people who love them and living in a comfortable, familiar environment. You may even have promised them that you would never put them in a residential home.
It’s important to recognize, though, that sometimes a residential home is the right choice. As dementia progresses, the care needed evolves, explained Mary Lou Hernandez, a social worker at Banner Alzheimer’s Institute in Phoenix.
In the early stages, your loved one might do fine at home. As their disease progresses, they will need more attention and supervision. At this point, you might want someone to come in and provide care at home for several hours per week, or you might want to enroll them in adult daycare.
Eventually, though, you may reach the point where residential care becomes necessary. “When a person has dementia, they become more dependent and have greater difficulty managing daily functions and personal care. Judgment and insight are gradually impaired,” Hernandez said.
Residential care can give the person with dementia 24-hour supervision in a secure environment. And with residential care, the primary caregiver can get a respite and can return to their roles as a spouse, partner, son or daughter, or friend.
Signs that it’s time for you to consider residential care
You need to consider the needs of both the primary caregiver and the person with dementia. It might be time to consider residential care if the primary caregiver:
- Is overwhelmed or emotionally exhausted and stressed
- Has chronic conditions or physical limitations that make it difficult to provide care
Or if the person with dementia:
- Resists personal care
- Is increasingly irritable or agitated
- Has delusions or hallucinations
- Becomes less motivated to participate in activities, leading to isolation
- Does not recognize the caregiver
- Tries to leave or wanders away
If the person with dementia lives alone or with family that works full time, other risk factors come into play. The person may:
- Forget to take medications or to eat
- Try to cook and leave the stove on
- Open the door to strangers
- Give out personal information on the phone
- Wander away from home without knowing how to return
Evaluate your options before you’re in crisis mode
“My recommendation is to be proactive in planning—think ahead before a transition is needed. It is easier to investigate options for residential care at your leisure rather than in crisis mode. This allows for a ‘plan B’ that has been well thought out and is in place when you need it,” Hernandez said. A plan B (or alternate plan) is also important in case the primary caregiver dies unexpectedly.
Should the person with dementia be involved in the planning? Probably not, according to Hernandez. “It can be confusing and overwhelming. Since the person with dementia has short-term memory changes, they may forget the reason for the move and change their mind. And if you are planning for the future, they may not realize this and think they are moving now,” she said.
For someone with very mild dementia who wants to be involved, narrow the search to two or three top choices before you include them. If they have mentioned a place they would like to consider, keep in mind they may not remember their preference as their disease progresses.
Strategies to deal with the guilt
Recognize that it’s common to feel guilty when you’re making this decision. “Caregivers may feel it is their responsibility to care for the person with dementia and they are ‘giving up,’” Hernandez said. “If you are considering placement, it is to improve the safety and care needs of the person with dementia. You are still the advocate, looking out for their needs.”
A caregiver support group can help you connect with people who are facing the same challenges, so you don’t feel so alone.
“Be aware that all family may not agree with placement, but if the primary caregiver cannot continue care at home, it is important to follow what is best and safe for both of them,” Hernandez said.
She points out that making these plans is most stressful for the family and caregivers. “Many times, the person with dementia adapts much better than family and caregivers thought they would,” she said.
How to handle conversations about residential care
For caregivers who are in the earlier stages of helping a person with dementia, it is best to say, “I will honor your wishes as best as I can or as long as I can” rather than “I will never place you.” Reassure them that you will always find the best place for them.
You could start a conversation by saying, “if you needed a different place to live, where would it be?” Or, you can focus on another family member who was placed in residential care and ask the person with dementia what they think.
The bottom line
If you’re caring for someone with dementia, you may want to keep them at home. But sometimes residential care is the best option for both the person with dementia and the caregiver.
To learn more about navigating dementia, check out these articles:
