This is part two in a three-part series on caregiving and how policies impact married couples and adult children who are caregiving.
Before Nancy Bennett moved her husband Larry into a long-term-care community, she turned to friends who knew the terrain.
Kitty Hafner had professional knowledge of aging services and local facilities. Tina Osborne accompanied Bennett as she visited a prospective home, offering steadiness during a decision that felt overwhelming. For Bennett, the search was more than just finding an open room in a small town with limited options for dementia patients. She also wanted a place that was close to home, so she could visit Larry. She wanted a place with a solid reputation. They had retirement savings, but cost still matters because it increases with each level of care. Most of all, she wanted trained staff who would understand Larry and be mindful of his values and interests.
That is the standard families should use: not merely whether a facility has availability, but whether it can meet the person’s needs, affirm the person’s identity and support the caregiver who must live with the decision.
Beyond the brochure
Larry has vascular dementia. Bennett said he had been happy in his first facility at first, but the experience changed after a sale and change in ownership. She said the change in leadership showed when staff lacked the expertise to respond appropriately when Larry began inappropriate behaviors toward other residents. Medications were tried, but the problem was not resolved. Eventually, the family was asked to take him home.
The experience exposes a critical but often overlooked question: Is a facility equipped to provide dementia care that is also respectful of diverse human identities?
Residents do not lose their sexuality, gender identity, religion, cultural history or need for dignity because they enter long-term care. Families should ask how a facility trains staff to respond to dementia-related behaviors; how it protects consent and safety; how it supports LGBTQ+ residents; and whether it has a clear, humane protocol before turning to medication, involuntary discharge or pressure on families to take someone home.
Training and culture matter, even more so in small towns where options are limited. Bennett believes a community’s atmosphere often reflects its leadership. Families can observe that culture by visiting more than once, speaking with staff across shifts, asking residents and families about responsiveness, and paying attention to the communication to families and activities for residents.
When ownership changes
Ownership changes can destabilize even a successful placement.
Gunther’s mother initially settled into a memory-care home after a trained therapist carefully helped make the transition possible. Then the home was sold and was no longer going to continue as a senior- or memory-care operation. Gunther’s mother had to move again—first through rehabilitation after a fall, then into another memory-care setting.
Bennett’s account shows a different version of the same risk: after a sale, she was asked to move Larry.
Families cannot prevent every sale, staffing change or service reduction, and these changes often leave families powerless.
They can ask facilities what protections residents have when ownership changes, whether current residents are guaranteed continued placement, who will communicate updates, and how medical records and care plans will transfer. Still, Indiana policymakers should consider whether families need stronger notice requirements and clearer continuity-of-care protections when facilities change hands.
The caregiver’s changing role
A move to long-term care does not end family caregiving. It just changes it.
Bennett initially felt guilty if she did not visit Larry every day. Over time, she settled into a pattern of visiting about three times each week. Conversation is difficult because Larry cannot retain recent events, so they play Skip-Bo, a game that still lets him participate and succeed.
Gunther has watched her father move from husband and daily caregiver to visitor, advocate and survivor of a relationship altered by Alzheimer’s. He has struggled with stress, difficulty sleep[SG2] ing and the loss of the companion he knew for more than six decades.
Both Bennett and Gunther speak to the need for caregivers to discover their new roles. A meaningful visit might be a card game, a shared meal, familiar music, old photographs or quiet companionship. It does not need to be a marathon visit, and it does not need to look like the relationship that existed before dementia.
A good facility does not replace family. It gives family members enough support and trust to stop being full-time crisis managers and become daughters, spouses, friends and witnesses again.