Lamy Center Caregiver Connection: The Advocate and the Roommate
Written By: Rudi Lamy, MLS, MAS, Consultant to the Peter Lamy Center on Drug Therapy and Aging
In my experience, there’s a difference between roommates at home and in care. I was my wife’s caregiver for approximately 11 years. We shared our home, our chairs, our bed, our kitchen, our bath. Now that she is a full-time resident of an Alzheimer’s care facility, she shares a room with someone else. Rather than her caregiver, I am now her advocate – and sometimes roommate buffer.
My experiences as caregiver and advocate for a patient with dementia living in a private room have been wide-ranging. When my wife first needed care, I provided that at home. But eventually, she moved into a private room in assisted living, and then about two years ago, she was placed in full-time skilled nursing care.
In my earlier postings, I hope I was clear about my duties, first as caregiver and then as advocate, but I didn’t speak much about my wife’s rooming situation. As a requisite precaution, this is a recounting of my personal experiences. No two advocates, caregivers, patients, or facilities will be exactly as mine have been. You would need to adjust to your own situation.
Caring for a patient with a roommate
Cohabitation is a very different experience for both patient and their advocate. I often find myself running errands for two people and keeping an eye on both. I am frequently picking up after two people or talking to the roommate while putting skin cream on my wife, for example. I’ve more than once gone to the nurse or caregiver and said the roommate is falling out of bed.
There has been, over the years, both professional and para-professional published writing about the differing impacts on patients of private and semi-private rooms. These articles include discussions of the influence of a private room made to remind of home or the increased social interaction provided by a semi-private room.
Normally I would not reference publications older than five years to produce a suggested reading list. However, in this instance, I thought it best to add just a few older articles to provide historical background on the thinking of dementia care specialists. Also, remember that as a librarian, I can tell you with confidence that the bibliography of published material may be just as important as the article, book, or other published material the bibliography accompanies.
Please peruse the readings below if you want a deeper dive into this topic. Be well, and thanks again for reading.
Rudi
Research and Readings
Charras, Kevin & Zeisel, John & Belmin, Joel & Drunat, Olivier & Mélanie, Sebbagh & Gridel, Geneviève & Bahon, Frédéric. (2010). Effect of Personalization of Private Spaces in Special Care Units on Institutionalized Elderly with Dementia of the Alzheimer Type. Non-pharmacological Therapies in Dementia. 1. 121-138.
Connellan K, Gaardboe M, Riggs D, Due C, Reinschmidt A, Mustillo L. Stressed Spaces: Mental Health and Architecture. HERD: Health Environments Research & Design Journal. 2013;6(4):127-168. doi:10.1177/193758671300600408
Landmark B, Kirkehei I, Gundro Brurberg K, Merete Reinar L. The Physical Environment for People with Dementia [Internet]. Oslo, Norway: Knowledge Centre for the Health Services at The Norwegian Institute of Public Health (NIPH); 2009 May. Report from Norwegian Knowledge Centre for the Health Services (NOKC) No. 11-2009. PMID: 29320034.
Morgan, D. G., & Stewart, N. J. (1998). Multiple Occupancy Versus Private Rooms on Dementia Care Units. Environment and Behavior, 30(4), 487–503. https://doi.org/10.1177/001391659803000404
Oh J. Stroke patients’ experiences of sharing rooms with dementia patients in a nursing home. International Journal of Nursing Studies. 2006 Sep;43(7):839-49. doi: 10.1016/j.ijnurstu.2006.03.009. Epub 2006 May 18. PMID: 16712851.
Young, C., Edwards, C., & Singh, I. (2017). Impact of Hospital Design on Acutely Unwell Patients with Dementia. Geriatrics, 2(1), 4. https://doi.org/10.3390/geriatrics2010004
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Rudi- once again you have succeed in putting a very human face on a difficult situation- Congratulations!
Your personal approach is so welcome in behavioral health since it makes it personal for the reader, who, if they are a HC provider, does not often encounter that in their professional training or reading. It’s not that providers are insensitive, it’s just that we are trained to look for solutions to common problems. And that leads to “what to do for this” lists. But dementia patients typically present not as “1 size fits all” but rather “1 size fits 1” situations.
Your bibliography here is superb!
Thanks again for sharing your very human perspective– Ken