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 Study on caregiver burden, AFTD Newsletter Summer 2009 
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Study on caregiver burden, AFTD Newsletter Summer 2009
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.

Here's the article and a link to the newsletter.

Robin


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.

Coping
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.

Caregiver motivation
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.

Adaptability
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.

Balance
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.

Unprocessed grief
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.


Thu Aug 20, 2009 2:15 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 769
Location: LA
Post Dementia diagnosis!
I give up! I positively do not have an idea in the world what Mr Bobby has. I read about Alzheimer's and Frontotemporal and Lewy Body and it always ends up matching more Lewy Body than the others although it could be the others except I notice the strange reaction to different medicines... Some that are supposed to be benign and helpful can send Mr B. up the walls, literally. Things are going down hill at our house but he continues to respond to my treating the symptoms however I can hardly ever see the old Mr B. I miss him. I continue to be thankful for the blessing that he still goes to bathroom for himself, now if I could teach him how to aim straight and always raise the lid so he can have a round hole to aim at, I would really think things were swinging. I'm thankful that the parkinsonisms are more or less infrequent. I have other things about this that I can be thankful for. A positive diagnosis is not one of them.

To other caregivers who are up this time of night, I hope you get to bed soon, I'm on my way for a few hours rest before daylight.

DrP


Fri Aug 21, 2009 4:16 am
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Joined: Sat Jan 27, 2007 8:38 pm
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Dear Dorthea --
Just posted a pee tip (after I read your post) as a new thread. Tell me what you think! Meow!

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Renata (and Jerome-in-Heaven)


Fri Aug 21, 2009 12:29 pm
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Joined: Sat Jan 31, 2009 7:21 pm
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Dorothea: I love you too! :) I found your post most comforting......who the heck knows what this is, but it's here & I do what has to be done. Thank you, you dear person. Dee


Fri Aug 21, 2009 3:43 pm
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