The State of Care: Dementia Care Facilities Across State Lines

Members of modern families are often separated by geography. When a parent’s dementia reaches the crisis point, choosing a residential facility can be very hard. It takes cooperation and research to find a site that offers quality care and shared geographic access.

My friend Rob and his siblings have moved their mother three times. Though the moves were necessary to ensure her care and safety, his mom resisted change. The first stop was an assisted living facility in Florida , her long-time state of residence. Her children were spread across the U.S., but she wanted to stay in Florida so they found a site where staff members monitored her safety and well-being on a daily basis. As her condition declined, it become harder for her children to oversee her care from a distance. Rob’s mom then moved to a second Florida facility with more supportive services. When her dementia advanced further, Rob finally moved her to Pennsylvania. After three moves, his family learned a lot about choosing facilities.

When deciding between providers, Rob’s family reviewed incident reports from each facility under consideration. Sites with many incidents may have serious problems with the delivery of care. Anyone can check the incident records of individual nursing homes by going to the Member of the Family website. Once there, you can click on your state, and compare the number of serious incidents reported at each facility. You can also determine whether a facility has been place on the National Watch list. Homes on the National Watch List have had recent survey violations or substantiated complaints of actual harm or immediate jeopardy to residents in their care.

Ultimately, Rob’s family selected a care facility that was close to Rob’s house. This proximity allows him to check on her every day. His siblings fly in periodically to do the same. The site had some violations but Rob felt they were due to the building’s large size. Residents are spread over 24 floors with various levels of care. He believed that choosing a nursing home near his house would allow him to make more visits to monitor his mom’s care. When I asked him whether he saw much variation in quality at her three care providers, Rob said, “There are problems in all these institutions. But being present as an advocate makes a huge difference.” He thinks his mom is getting better care in Pennsylvania, but that is “only because I’m such an active participant in her care.” In his experience, administrators appreciate family involvement as long as issues are presented in a calm, professional way. If he must discuss problems with them, he writes everything down and gives his letter to an administrator to make a record of the matter. He also reminded me that many people go in and out of a dementia patient’s room and families should never leave valuables there. His family learned this lesson the hard way when his father’s wedding band disappeared from his mom’s room.

Rob also suggests that families consider the type of care a loved one will need in the long run. At his mother’s current facility, she has to run out of money and qualify for Medicaid before she can be placed in a skilled nursing unit. Because there is a wait list for those Medicaid beds, she will get progressive care until a bed becomes available. If your loved one moves to an assisted living facility that has no skilled nursing, later on it may be tough to secure a bed at another site. All things considered, if you are considering a move for your loved one, planning ahead ought to come first.

3 Responses to The State of Care: Dementia Care Facilities Across State Lines

  1. I’m impressed, I have to admit. Rarely do I encounter a blog that’s both educative and amusing, and let me tell you, you have hit the nail on the head. The problem is an issue that too few people are speaking intelligently about. I am very happy that I found this during my hunt for something relating to this.

  2. as long as the left knee kept moving, she wodlun’t replace it.) Mom could not stand without help. We used a lift chair in the living room, which helped. We used a transfer belt on her at all times (unbuckled it when she was sitting) and a walker. Because of Mom’s dementia, we had to talk her through each transfer. (Right hand up on walker, left hand back to chair. Bring feet back towards chair. Etc.) We did have a hospital bed, which did help, especially because she was so tiny (4’8 ) and that let us get the bed low enough. We had a hoyer lift for those days that she just couldn’t walk (used it less than a dozen times). The other piece of equipment was a lumbar support belt for me, to help protect my back. Mom did not do well walking in rehab, or in the adult family home. It took a consistent routine, and trust on her part for her to be able to stay mobile. I hope that helps. If your Mom’s knees are good, a sit to stand might just work. They also have those poles that go floor to ceiling and have grips for beside the bed. We couldn’t use those because Mom couldn’t grip. If you can get a good home physical therapist, she (or he) could be a huge help. We had a great one that came for almost a year, and helped us develop a routine that worked.

    • BetteSeptember 12, 2011I just returned from the Home Health Products store. It was more diicffult than I realized emotionally to look at beds for my mother. This is when I am revisited a bit with anger and disappointment towards my brothers and their uninvolvement The doctor will be notified via fax before they can release a bed this is for insurance purposes.I will need to find another store for the floor to ceiling pole as they do not carry it there.My mother has been in tears this morning with pain. She is over at the hospital having an x-ray done as I write this.I stopped at the doctors this morning. I asked for a face to face consult with her. She’s booked until October , but they will see what they can do. I want to talk about the evaluation that Denise suggested and ask about managing all this pain/gather information on Hospice or any additional help that she may be entitled to. This morning the pain was in her arms, legs, and back. I will post an update after I talk with the doctor.

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