Joined: Fri Aug 11, 2006 1:46 pm
Location: SF Bay Area (Northern CA)
4 Recommended Books for LBD Caregivers
I was able to get a copy of the article* but am expressly prohibited from providing excerpts. It's OK because I can easily tell you what the paper is about...
The author quotes another researcher's view that just as the experience of no two patients is alike, the experience of no two caregivers is alike. Ms. Nicholson says that more work is needed to "better understand the experience of caring for a person with DLB."
Ms. Nicholson read four books by caregivers:
"A Matter of Timing: Alzheimer's â A Carer's Journey," by A. Brown, 1998.
"Daddyboy: A Memoir," by C. Wolfe-Konek, 1991.
"The Long Good Night: My Father's Journey into Alzheimer's," by D. Simpkins, 2003.
"Take Me Home: Parkinson's, My Father, Myself," by J. Taylor, 2007.
While these books are supposedly about caregiving for those with AD (the first three) or PD (the final book), Ms. Nicholson believes that these books may be more helpful to those caring for people with DLB. In fact, she suggests that perhaps the patients represented by the last three books actually had DLB or PDD rather than AD or PD.
In the case of "Daddyboy," Ms. Nicholson indicates that the patient (father) was diagnosed with "PD dementia syndrome" in 1980 but the family chose to accept an AD diagnosis because of that disease's higher profile. DLB hadn't yet been described as a disease.
In the case of "The Long Good Night" author, Ms. Nicholson indicates that DLB was never mentioned. In the case of the "Take Me Home" author, Ms. Nicholson indicates that a diagnosis of DLB had been made but was not shared with the family while the father was alive.
Ms. Nicholson concludes that we should evaluate all resources available to us, not just those labeled "for DLB caregivers." She believes that these four books can be very helpful to DLB caregivers.
Has anyone read one or more of these four books?
One final thing.... I liked this quotation from "A Matter of Timing," the first book, which is provided in the article:
"I am aware that for many years I have been living a sort of bereavement but I have no idea at all about how I will cope with a real one. Everything that lies ahead is unknown and all I can do is what I have been doing for so many years â live a day at a time and fill every minute as usefully and pleasantly as I can. I cannot help my emotions â bitterness, despair, anger, remorse, guilt, self-pity. They are awful, negative ones. But there must be room for happy thoughts â I try to brush aside the sadness and think of making every moment as happy as possible. (p. 134)"
* Here's the abstract of the article:
Australasian Journal on Ageing. 2009 Dec;28(4):177-81.
Carers' narratives: Finding dementia with Lewy bodies experiences.
Centre for Program Evaluation, Faculty of Education, The University of Melbourne, Parkville, Victoria, Australia.
Carers' narratives provide a unique insight into the caring experience. From a human interest perspective they have appeal to the general population; however, they also target and are read by niche audiences - families striving to understand the challenges of the caring role.
This article examines four carer narratives and their relevance to particular niche audiences; three classified from the information provided on their book covers as pertaining to Alzheimer's disease and one to Parkinson's disease. It explores the impact of care on the caregivers and reviews the promoted diagnoses in light of the current understanding of dementia with Lewy bodies.
The author argues that the information provided in the titles, in good faith, may not reflect the content of the narratives and that three of these narratives may provide carers of people who have dementia with Lewy bodies with insights into the challenges that this disease presents.
PubMed ID#: 19951338 (see pubmed.gov for this abstract only)