When Living at Home Is No Longer Possible

I sit with them: the devoted family member who has done everything they can to care for their parent, spouse, sibling, or friend with dementia in the person’s home, and who has “promised,” sometime in the past, that the person would “never have to leave their home.” The daughter who says she cannot break her promise to her mother. The brother who feels he owes his older brother who raised him after their mother died. The sisters who shared a bedroom growing up and now sleep in the same room again, one never getting a full night’s rest as she keeps one ear tuned to every breath and movement of her sister with dementia.  I remind them that those promises were made out of love and with good intentions. I point out that those words were spoken before caring for the person with dementia became a daily reality, before the person they knew and loved slowly faded away, and before what seemed doable now is a daily challenge that is taking its toll on them and their loved one.

There truly is no place like home—a place of familiarity, of comfort, and of normalcy. It does not matter if it is a single-family home, a rented apartment, or a trailer. It does not matter if it is a place one has lived for decades, where they raised their children and celebrated holidays with grandchildren or a more recently acquired residence moved into after retirement. Ideally there would be the resources—people, money, time—to allow each person with dementia to remain in their own home, if that is their stated desire, for the course of the illness until death.  For many, there comes a time in the course of a dementing illness when the option of moving a person out of their home has to be discussed. Sometimes it is the family member who asks, “What do you think, would they be better living elsewhere?” Sometimes it is the provider who has to say, “This situation is no longer working. It is not healthy, and I think it’s time you considered having the person live elsewhere.”

The decision to move someone out of their home to a facility—be it a board and care, an assisted-living memory care unit, or a nursing home—is not considered lightly or easily accomplished. Often the family member who has been the primary caregiver views this decision as evidence of failure. Usually, there is nothing further from the truth. In my experience, caregivers often have done more than they should have, sacrificed themselves and given up many aspects of “normal” life, including jobs and relationships, to care for their loved one. The failure is our system, or lack of a system, to provide adequate support, training, respite, and other services that are essential to enable a person with progressive dementia to remain at home safely as a part of the community.  

The decision to place a family member in a facility is a difficult one that families often avoid and delay until there is a crisis that requires them to act. This could be an acute illness or exacerbation of behavioral problems in the person with dementia that exceeds the capacity of the family to continue to manage the person at home, perhaps a sudden severe illness of the primary family caregiver or an outside event that requires the family caregiver to no longer be available to provide care. The decision is usually made by the caregiver or the caregiver with the extended family as proxy decision-makers. The person with dementia often cannot be included in this decision-making process due to the severity of their disease and their inability to understand the situation and issues precipitating the move. People with dementia who can voice their preference continue to express a strong desire to remain in their own home.¹ Family caregivers recognize this and express the same wish, however, concerns about health and safety of all involved make it impossible for the person to remain at home. This can leave the person with dementia feeling angry and resentful and leave caregivers feeling guilt and failure, which makes the out-of-home placement decision and transition even more difficult.  

The popular myth is that families abandon their older relatives to a long-term care facility. Both my experience and published studies on caregiving show that this is generally not the case. Once a family member is placed out of the home, the caregiver’s role is not over, but it changes.  Family caregivers continue to be involved, and most visit their family member regularly. Some, especially a spouse, may visit daily and spend many hours being with their family member.  They may no longer be primarily responsible to provide all of the person’s care needs that they previously did, as there is now paid staff to do these tasks, but many continue to assist with personal care needs such as dressing and feeding. Now, however, the caregiver’s role has changed as it becomes their responsibility to ensure that their family member’s needs are being properly met in the new location. The caregiver assumes the role of resident advocate, interacting with staff and administration on a regular basis, becoming the “voice” for the patient who can no longer care for themselves.  

The literature often focuses on placement, or institutionalization, as an outcome to be avoided. This stigmatizes the decision-making process and may indirectly lead health care professionals to be reluctant to assist families who need guidance and support. My experience caring for dementia patients and working with them and their families for over 3 decades has taught me that when this decision is made usually it is unavoidable. Benefits and burdens have been identified that are associated with caregiving. When the burdens, the cost to either the family caregiver or the patient or both, exceeds the benefits, that is when the decision has to be faced. Ideally the discussion of out of home placement as a possibility has been broached before this time, before there is harm or potential harm to either the patient or caregiver. Clinical interventions that better prepare families, particularly the primary family caregiver, for possible placement and for the transition in care and the caregiving role would have potential benefit for all, including the patient, family, and facility and staff involved in care at this time. 

Reference

1. Lord K, Livingston G, Robertson S, Cooper C. How people with dementia and their families decide about moving to a care home and support their needs: development of a decision aid, a qualitative study. BMC Geriatri. 2016;16:68.