This abstract is fascinating. Maybe someone out there can get the full article?

The last section is probably controversial to many LBD caregivers: "When BPSD [behavioral and psychological symptoms of dementia] occurs in a person with dementia, the burden on caregivers increases. At such times, physicians tend to side with the family rather than with the patient. However, medical care is intended to be for the afflicted person, and physicians should base their plans for medical intervention on this principle."

Who is advocating for the caregiver?

Robin



Psychogeriatrics. 2010 Jun;10(2):90-4.

Issues facing home-based medical support services.

Kinoshita T, Hanabusa H.
Kodama Clinic, Shinagawa, Japan.

Abstract
The first part of the present review describes the current status of elderly people with behavioral and psychological symptoms of dementia (BPSD) in the community and basic viewpoints for differentiating between different forms of dementia. Specifically, it focuses on four points among the data and research related to determining the current status of elderly people with BPSD.

We also propose basic concepts for differentiating between the core symptoms of dementia and BPSD, BPSD and delirium, and agitation and delirium.

In the second part of the present review, various aspects of the symptom 'agitation' are discussed based on the experience of our home visit medical service for people with dementia by describing two cases.

In cases such as Case 1, where the subject was given high doses of antipsychotics, we believe the problem was that the physicians immediately abstracted all of the abnormal behavior in the subject's life as 'agitation', and provided treatment to the subject accordingly.

In Case 2, where the subject had dementia with Lewy bodies (DLB), we propose that it is crucial to differentiate clearly between agitation and delirium.

Both of these cases show the risks of focusing treatment simply on agitation.

When BPSD occurs in a person with dementia, the burden on caregivers increases. At such times, physicians tend to side with the family rather than with the patient. However, medical care is intended to be for the afflicted person, and physicians should base their plans for medical intervention on this principle.

PubMed ID#: 20738813

Good question, Robin! Although I agree that the patient's needs must come first, part of the patient's needs involves caregivers. If the caregiver is unable to safely manage the patient's behavior, the patient will not receive the care he/she requires. I have three friends whose LOs have dementia who have had placement problems due to behavior. Two of them had their LOs in four facilities before finding one that would keep them. My husband was refused further treatment at a SNF because of 'behavioral issues'. Those of us who care for our LOs at home face questions of personal safety as well as the safety of our LOs because of these issues. If they are not addressed, we are helpless.

What would it be like if the drs. who don't consider caregiver needs had to take care of our loved ones, all by themselves, for just 24 hours?

Lynn, I think we should demand it! LOL!

I have felt that it's a bit odd that since my mom has been in my care, the doctors' direct many questions to me and the ones that they ask her, they look to me to confirm or deny. It was a bit awkward at first, but after 13 months, I'm used to it. However, I have wondered how they know that I'm right or that her best interests are served by me? I'm assuming they look for signs of abuse, but the assumption that I know better right off the bat unsettles me. I've read too many stories of the elderly being mistreated and can't believe that no one picked up on the abuse sooner. I would hope that my mom's doctors recommend what is best for her and if they deemed something necessary, I would hope that they would act on her behalf.

You all are here because you care tremendously for your LO, but I'm not convinced that all care givers out there always act with the person's welfare in mind.