This article will likely be of interest to all caregivers, not just those dealing with dementia.
The Association for Frontotemporal Dementias has an interesting article on the “caregiver burden” in its Summer 2009 newsletter, which I just received in the mail. “Caregiver burden refers to the strain caregiving exerts on the psychological, physical, financial and spiritual well-being of the caregiver.” Some of the researchers’ findings were:
* The caregiver burden was similar if a loved one was living in a nursing home or at home.
* The “caregivers who were inclined to sacrifice themselves in their caregiving role were those who had most psychological problems and least quality of life. We expect that short psycho-educative sessions for the caregiver on selfcare…and paying attention to the barriers a caregiver may experience in accepting support, may improve the balance between caring for the patient and caring for the self.”
* “For psychological and physical well-being it is important to grieve along the way. ”
* Over a two-year period, “caregivers reported an increase in negative, non-supportive social interactions. It would thus seem that….coping strategies may damage potentially supportive relationships.”
FTD is the second most common form of dementia affecting the middle aged. CBD is considered a sub-type of FTD, while PSP is considered a related disorder. Because there are many similarities between CBD, PSP, and FTD, they are often confused for each other. One person in our local group had a clinical diagnosis of PSP and a pathological diagnosis of FTD.
Here’s the article and a link to the newsletter.
http://www.ftd-picks.org/wp-content/upl … etter1.pdf –> see page 8
Burdening Care: A study on informal caregivers of frontotemporal dementia patients
By Samantha Riedijk, PhD, Erasmus Medical Centre, Rotterdam, The Netherlands
AFTD Newsletter, Summer 2009
In their search for disease causing genes, researchers of the Erasmus MC were struck by the clinical picture of FTD. The
behavior of the patient was most painful to caregivers, especially during the period when the (right) diagnosis was yet to be made. Caregivers and the social environment of the patient had great difficulty understanding the problematic behavior
of the patient. Support programs for dementia caregivers did exist; however, these were focused on older caregivers of
Alzheimer’s Disease patients. Not surprisingly, the FTD caregivers indicated they could not find the support they needed.
We realized this specific group of FTD caregivers needed more attention and initiated this study.
We started our research into the burden of FTD caregivers in order to investigate how these caregivers were keeping up, and to generate recommendations regarding how to best support them. Caregiver burden refers to the strain caregiving
exerts on the psychological, physical, financial and spiritual well-being of the caregiver. A total of 63 FTD patients and
their caregivers participated in our two-year follow-up study.
Support after institutionalization
Of the FTD patients included in our study, 34 were living in a nursing home at the start of our study and 29 were living
and cared for in their home. Strikingly, both groups of caregivers reported similar caregiver burden. A possible explanation
may be that despite the fact that caregivers had fewer tasks; they continued to worry over the patients. In the Netherlands, some nursing homes offer group sessions to caregivers guided by a trained psychologist. Our findings underscore the need of such provisions.
A caregiver may employ a variety of strategies in coping with the caregiving situation. Remarkably, nearly all caregivers
tended to increase their depressive reaction pattern during the two years we followed them. This pattern implies caregivers felt more pessimistic about the future and unable to influence the hopelessness of their situation. Furthermore,
caregivers reported increased emotional expression of negative emotions such as anger and frustration. Simultaneously,
caregivers reported an increase in negative, non-supportive social interactions. It would thus seem that these coping strategies may damage potentially supportive relationships. We suggest professionals assess the coping strategies the caregiver employs and aid the caregiver in coping more adequately if necessary.
In an in-depth interview we asked caregivers what motives they had for providing such intense care. Most caregivers
indicated they provided care because they felt this was their marital duty. The second most stated motivation was the love the caregiver felt for the patient. Some caregivers indicated that it was in their nature to provide care and others revealed that it was only by seeking enough distraction they were able to provide care.
We followed the FTD caregivers and patients during a period of two years, during which most of the FTD patients reached the end-stage of the disease. However, FTD caregivers reported stable levels of psychological, physical well-being and the quality of their relationship, and physical health complaints had even decreased somewhat. We suspect the ‘response
shift’ phenomenon may explain the stable report of well-being and relationship quality. Response shift implies that people adapt to the hardships in life by resetting their internal standards. Instead of valuing a career and health, a caregiver may now experience quality of life from small things such as a beautiful sunset or unexpected phone call from a friend. From these findings we may protract a hopeful message to caregivers at the beginning of their caregiving career, which is that in time they will find ways to experience quality of life and satisfaction from their relationship in spite of FTD.
Finally, we discovered that the FTD caregivers who were inclined to sacrifice themselves in their caregiving role were those who had most psychological problems and least quality of life. We expect that short psycho-educative sessions for
the caregiver on selfcare; what it implies and how to do it, and paying attention to the barriers a caregiver may experience in accepting support, may improve the balance between caring for the patient and caring for the self.
There may be other barriers withholding FTD caregivers from providing good care to themselves. Many caregivers
experience inner conflict when they mourn a loved one who is still alive. For psychological and physical well-being it is
important to grieve along the way. Health care professionals may contribute by providing psycho-education on grieving and actively offering grief counseling.
Conclusions and recommendations
A number of issues warrant special attention in supporting FTD caregivers. First of all, an assessment of the caregiver’s
coping strategies should be made. Second, it should be explored whether the caregiver is maintaining a balance in
caring for the patient and caring for himself. Third, we recommend addressing the processing of grief as an inherent aspect of losing a loved one to dementia.
Dr. Samantha Riedijk is a medical psychologist at the clinical genetics department of the Erasmus Medical Centre. She lives with her husband and two children in a Rotterdam suburb.