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 LBD Caregiver Burden- More Studies Published 
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post LBD Caregiver Burden- More Studies Published
In late 2007 LBD caregivers took an online survey. (Surprisingly, I don't think anything about the availability of this survey was posted by the LBDA here in late 2007. I had intended to link to the post.)

An article was published earlier this year (see Celia's post from May 2010 -- viewtopic.php?f=1&t=2265&p=17767), looking at data from 962 caregiver respondents.

The data were re-analyzed and published in the journal The Gerontologist last month. The Gerontologist article only looked at data from the 611 respondents who were current caregivers, as opposed to all caregivers -- current and former ones.

The researchers who looked at data from 611 caregivers made similar findings: Predictors of caregiver strain were:

* presence of behavioral and emotional problems (BEPs)
* impaired activities of daily living (ADLs)
* isolation
* caregiver age
* patient gender

These factors were NOT associated with caregiver burden:

* falls
* formal service use [I'm guessing this means adult day care, hired in-home care, etc.]
* difficulty finding a physician
* evaluation of the physician

The article in The Gerontologist concludes with this paragraph:

"In conclusion, caregivers of LBD patients experience significant perceptions of burden that is heightened by BEPs, impaired ADLs, sense of isolation, and challenges with the diagnostic experience. Future interventions can now be designed to address each of these challenges, whether unique or common to the caregiving experience. At a more general level, public awareness campaigns that move beyond characterization of AD and dementia as synonymous and which address the other main types of dementing illnesses can help generate interest and understanding, and perhaps stimulate efforts to develop appropriate supportive services for patients and their family caregivers."

Note that one factor -- diagnostic difficulty -- was NOT mentioned in the abstract as being a predictor of caregiver burden, but it is mentioned in the conclusion. Caregiver age and patient gender were not mentioned in the conclusion of this article but were mentioned in the abstract.

This statement in the article was interesting to me personally: "Research has also found that adult child caregivers experience more distress because they may have not intended on taking on the care role."

You can find The Gerontologist article available for free online here: ... nq055.full (HTML version) ... l.pdf+html (PDF version)

You can find the LBDA's summary of this article here: ... burden.htm

And you can find the LBDA's report on "Caregiver Burden in Lewy Body Dementias," published in July 2010, here: ... entias.htm

Copied below are some of the more interesting excerpts from the full article in The Gerontologist.



"Lewy body dementia (LBD) is the second most prevalent type of dementia in the United States, accounting for 10%–20% of cases. It is often confused with and misdiagnosed as Alzheimer’s disease (AD). LBD, however, displays unique symptoms and presents many discrete difficulties for patients and caregivers, apart from those presented by AD, including recurrent visual hallucinations, spontaneous alterations in concentration and attention, parkinsonian symptoms, and rapid eye movement sleep behavior disorders (RBD). Caregivers must assist with the behavioral and emotional symptoms that accompany LBD, which are more pronounced than in AD, and with motor impairment, falls, and higher levels of disability than with other types of dementia. These differences are most pronounced early in the disease process, and then as dementia worsens, there is more overlap between LBD and other dementias in behavioral and emotional symptoms. LBD caregivers also struggle through the challenge of obtaining an accurate diagnosis and adequate medical care for their relative."

"Distinguishing Features of LBD
LBD can be difficult to distinguish from AD due to the presence of overlapping symptoms and the temporal sequence of events. One reason for the overlap is that as many as two thirds of people with LBD also have AD pathology and the core features, while more common in LBD, also occur in AD. LBD differs from AD in that clinical features such as visual hallucinations, extrapyramidal symptoms, gait abnormalities, autonomic dysfunction, RBD, passive personality traits frequently occur early in the disease course and once present tend to persist. In addition, LBD is more likely to have more prominent visuospatial and functional impairment than AD at the time of diagnosis."

"Despite these differences and consensus diagnostic criteria for LBD, diagnosis for many patients is often delayed. Physicians may have limited training on how to make a diagnosis of LBD or in managing the symptoms associated with it. Furthermore, the Diagnostic and Statistical Manual (DSM-IV), the most widely used mental health diagnostic guidance resource, offers information that is highly reliable for identifying AD but not for other types of dementia. Although many community services are available for caregivers, such as support groups, home health aides, or care managers, providers may have little knowledge or understanding of LBD. The difficulties that caregivers experience in obtaining an accurate diagnosis and understanding of their relative’s condition may contribute to overall feelings of burden."

"A total of 984 people responded to the survey. Eligibility for the current study was limited to those respondents who indicated that they were currently involved in the care for someone with LBD. We did not include respondents in the present analysis who had previously been caregivers because of the concern that retrospective reports of experiences might be unreliable. After selecting for the eligible cases, a total of 611 current caregivers were used in the study. The socio-demographic characteristics of the sample are typical of LBD caregivers and patients with LBD. Average age was 56 years for caregivers and 75 years for patients. Women comprised 87% of caregivers and 39% of patients. The majority of caregivers (75.8%) had the main responsibility for care or shared it equally with someone else. Most patients (63.6%) were seen daily by their caregiver. The patients had been diagnosed with LBD on average 6 years prior to completion of the survey (range 1–22 years)."

"The very low rates [of service use] may also indicate that LBD caregivers are less likely to connect to a network of services than caregivers with more typical dementia diagnoses. Getting adequate and timely assistance has long been noted as a problem for family caregivers and that is no different in the current sample."

"In terms of socio-demographic variables, being an older caregiver was associated with more role strain and being a younger caregiver was associated with more worry about performance."

"Research has also found that adult child caregivers experience more distress because they may have not intended on taking on the care role."

"In addition, caring for a female patient was associated with more worry about performance for the caregivers. Though much research has focused on gender of the caregiver, with women frequently showing more psychiatric morbidity than male caregivers, little previous work has taken into account potential implications of patient gender."

"Some limitations in this study should be noted. First, we did not have an AD or general dementia comparison group to make direct comparisons on whether sources of burden are similar or different across dementias. However, the results have been compared with previous research, which has largely examined samples of caregivers assisting someone with AD or where a nonspecific dementia diagnosis was used. Furthermore, we do not have any information about the number of hours per week that a caregiver provides care. This would have been helpful to know in predicting caregiver burden. Another limitation is that the sample consisted of people willing to take an Internet survey. As such, the sample may be somewhat better educated and younger than the population of LBD caregivers and probably also better informed to start with. Given that likely bias, it is all the more telling that respondents reported difficulty finding information and resources about LBD. One advantage of this sampling approach is that it would have been difficult to obtain a large and representative sample of LBD caregivers through usual recruitment approaches. The web approach opens up the possibility of identifying groups of caregivers of people with diagnoses less frequent than AD or with other special characteristics."

"In conclusion, caregivers of LBD patients experience significant perceptions of burden that is heightened by BEPs, impaired ADLs, sense of isolation, and challenges with the diagnostic experience. Future interventions can now be designed to address each of these challenges, whether unique or common to the caregiving experience. At a more general level, public awareness campaigns that move beyond characterization of AD and dementia as synonymous and which address the other main types of dementing illnesses can help generate interest and understanding, and perhaps stimulate efforts to develop appropriate supportive services for patients and their family caregivers."

Tue Aug 24, 2010 5:19 pm

Joined: Tue Dec 29, 2009 2:28 pm
Posts: 463
Location: Minnesota
Post Re: LBD Caregiver Burden- More Studies Published
I would love to see caregiver burden identified as a criteria item for Social Security Disability. If Social Security does it, the private disability insurance companies will eventually follow. Caregiving would still be stressful, but nowhere near as stressful as caregiving and working full time in a high-stress job.


Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]

Wed Sep 01, 2010 12:59 pm

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: LBD Caregiver Burden- More Studies Published
Interesting idea. I'm not sure that would happen because SS Disability is for a permanent disability. Caregiver stress/burden ends when the care recipient dies.

Wed Sep 01, 2010 1:07 pm

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3113
Location: Vermont
Post Re: LBD Caregiver Burden- More Studies Published
Yeah, if you're still alive and well enough when your LO is gone.....

Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Wed Sep 01, 2010 2:39 pm

Joined: Mon Mar 08, 2010 9:32 pm
Posts: 118
Location: Dumfries Va
Post Re: LBD Caregiver Burden- More Studies Published
I would forget about an increase in Social Security but it would be nice. The Government doesn't seem to care much about LBD. I haven't seen much about research for LBD.

Wed Sep 01, 2010 6:26 pm

Joined: Sun Oct 04, 2009 10:18 am
Posts: 276
Location: Washington State
Post Re: LBD Caregiver Burden- More Studies Published
I've been told by medical professionals in Seattle that the best research on LBD being done in WA State is by Dr.s at the VA hospital. They say that it is because they get a lot of research money. When I was researching LBD specialists in Seattle, they all had connections with the VA. This may not be typical, but my experience with the government and LBD is pretty good. I have been very happy with my LO's treatment there.

Annie, daughter of brave Marie, dx 2007 and in ALF

Wed Sep 01, 2010 11:23 pm

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: LBD Caregiver Burden- More Studies Published is a website focused on elder care. (Note that there are ads on this website.) Its chief content officer wrote this good overview of LBD and LBD caregiving, quoting the research published earlier on the LBD caregiver burden.
Robin ... -dementia/

Understanding Lewy Body Dementia
By Julie Davis

Lewy Body Dementia (LBD) is the second most common form of degenerative dementia in the elderly, affecting an estimated 1.3 million people in the United States, yet it is most often misdiagnosed as Alzheimer's disease. According to experts at the Lewy Body Dementia Association (LBDA), nearly 80 percent of people with LBD received a diagnosis for a different cognitive, movement or psychiatric disorder before ultimately learning they had it. Misdiagnosis impacts patient and caregiver alike. The LBDA’s recent report, Caregiver Burden in Lewy Body Dementias, reveals that people with LBD and their caregivers face barriers to obtaining an early diagnosis and that caregivers experience moderate to severe emotional burden as well as a sense of isolation because so few people know about LBD.

Dementia: Not Just Alzheimer’s
Although it’s not as familiar to many people as other dementias, LBD affects an estimated 1.3 million individuals and their families in the United States. LBD is an umbrella term for two related diagnoses, Parkinson’s disease dementia and dementia with Lewy bodies. The earliest symptoms of these two diseases differ, but reflect the same underlying biological changes in the brain. Over time, people with both diagnoses will develop very similar cognitive, physical, sleep and behavioral symptoms.

Recognizing LBD
In 1817, Dr. James Parkinson first reported on the “shaking palsy” that “spared the intellect.” In 1912, Dr. Friederich Lewy reported microscopic protein accumulations in the brainstems of autopsied people with Parkinson’s. Over time, it became acknowledged that a large proportion of individuals with Parkinson’s also developed cognitive impairment that progressed to dementia. In 1961, the protein deposits that are now called Lewy bodies were also linked to progressive dementia that did not start with Parkinson’s disease, and by 1990 researchers across the world were using different names to describe a single disease that had motor, cognitive and psychiatric symptoms. In 1996, an international consortium established a single set of diagnostic criteria for the disease now known as dementia with Lewy bodies.

In 2007, researchers and clinical experts in both dementia and movement disorders established a new consensus that Parkinson’s disease with dementia and dementia with Lewy bodies probably share the same underlying disease mechanism and outlined important priorities for the future to lead to better diagnosis and treatment. Because LBD symptoms can closely resemble more widely recognized diseases like Alzheimer’s disease (AD) and Parkinson’s disease, it is under-diagnosed. Many physicians and other medical professionals are not familiar with the symptoms and management of LBD.

LBD’s primary symptom is a progressive dementia that features memory and language impairment and visuospatial and executive function impairment. Additional symptoms vary and can include fluctuating cognitive abilities, visual hallucinations, parkinsonism, rapid eye movement (REM) sleep behavior disorder and severe sensitivity to neuroleptics (medications used to treat hallucinations). Respondents to the LBDA survey reported these frequent early symptoms:

* Memory problems
* Shuffling or other walking problems
* Lapses or fluctuations in attention or alertness
* Hallucinations
* Driving difficulties
* Hand tremors
* Depression

Demands On Caregivers: The “Caregiver Burden In Lewy Body Dementias” Findings
The LBDA’s Internet-based survey of family caregivers was designed to better understand the impact of caring for a relative with LBD and was the first of its kind to highlight the plight of LBD families. Between December 2007 and April 2008, when the survey was posted on the LBDA website, 962 people with a relative with LBD completed it. Respondents included both people currently providing care for someone with LBD and people whose relative with LBD had already died. (A note about the responses: The results presented in the report include all respondents for those questions concerning characteristics, symptom onset, diagnosis and physician satisfaction. For the analysis of questions involving current levels of disability and current emotional or behavioral problems of the person with LBD, caregiver burden and resources being used, the results include data for only those people who were still caring for someone with LBD.)

The LBD Caregiver’s Profile:

* 88 percent of survey respondents were women 44 percent were daughters of the person with LBD and 35 percent were wives
* 64 percent of respondents indicated that they were the person who had primary responsibility for care of the person with LBD
* 46 percent of respondents lived in the same household as the person with LBD
* 62 percent indicated they saw the person with LBD daily

In contrast to Alzheimer’s disease (AD), significantly more LBD caregivers are women and are more often the spouse of the affected person (compared to AD, LBD is slightly more common in men than women).

Patient & Caregiver Challenges
Caregivers experienced significant barriers in obtaining a diagnosis for their loved ones. Most saw multiple physicians over more than a year before their relative was diagnosed with LBD and more than 75 percent of those with LBD were given a different diagnosis at first. Given the evidence that early, aggressive treatment with cholinesterase inhibitors may be even more beneficial to persons with LBD than persons with Alzheimer’s disease, these barriers are especially significant. Early diagnosis also provides physicians an opportunity to minimize exposure to medications that may aggravate symptoms, such as traditional neuroleptics, say the experts at the LBDA. It is estimated that almost 60 percent of persons with LBD may experience severe, potentially irreversible reactions to neuroleptics, which suggests traditional drugs, such as haloperidol, fluphenazine and thioridazine, should be avoided.

In addition to its role in good medical care, early diagnosis allows families and caregivers the time to plan for the expected decline, such as preventive steps to improve home safety, given the tendency for recurrent falls and rapid fluctuations in attention. Families also will have time to develop a better understanding of their role in patient care, including assistance with daily activities and provision of social and cognitive stimulation.

LBD is a complex disorder affecting cognition, mood, sleep, movement and behavior, and its symptoms often require a team of collaborating health care providers. In this survey, persons with LBD routinely saw an average of three physicians for ongoing care—it would not be unusual for a person to receive treatment for different LBD symptoms from a primary care physician plus specialists in neurology, psychiatry and urology. Today’s medical system is not set up to deal with the level of coordination needed between different physicians. More than half of the survey’s respondents had difficulty coordinating the care of different physicians, including conflicting medication orders and symptom management priorities of different physicians and dealing with adverse drug reactions.

Loss of independence often occurs early in LBD, with the inability to manage one’s own medications and finances. Driving is commonly curtailed early in LBD due to visuospatial problems, hallucinations or fluctuating cognitive abilities. LBD caregivers must provide increasing supervision and vigilance as the person with LBD experiences increasing executive dysfunction (affecting judgment and problem-solving skills), changing levels of cognitive abilities from day to day or even hour to hour, early incontinence, hallucinations and an increased risk for falls due to muscle rigidity or syncope (fainting). Recent studies demonstrate that LBD families need considerable resources and assistance from healthcare professionals and other health-related agencies, possibly even more than families caring for a relative with Alzheimer’s disease.

The Caregiver Burden
Respondents reported medium to high levels of burden brought on by the demands of caring for their relative:

* 38 percent of respondents reported they felt very or extremely burdened on 7 out of the 12 items measuring burden.
* Family members reported the highest burden when describing the impact of providing care on their personal lives, health and emotional well-being.
* One quarter of the sample said they felt that no one understood what they were going through.
* Over 80 percent said they felt somewhat or very isolated because of their involvement in providing care.

Most respondents indicated that their relative with LBD was not currently receiving paid help to assist with care, and most had not received paid help in the past. To help them cope, 23 percent of respondents were attending a support group and 21 percent reported their relative used an adult day services program. Among those respondents whose relative was receiving paid help, a majority was satisfied with the help that they received, but most rated the cost of services as a problem.

A majority of respondents also indicated they dealt with a crisis involving their relative within the past year, often due to behavioral problems or a sudden decline in functional ability. During a crisis, the most frequent place where respondents sought help for their relative was a hospital emergency room. The most common behavioral problems reported by caregivers included talking aggressively, shouting, hitting or attempting to hit someone and having hallucinations and delusions. Inappropriate sexual behavior also was reported. When behavioral problems dramatically increase and require emergency treatment, physical ailments like bronchitis, pneumonia, urinary tract infections or pain are often the cause. Medications also may cause agitation leading to behavioral problems. Falls and wandering are common in LBD and may necessitate a trip to the hospital, as would health emergencies unrelated to LBD. This frequent need for emergency care highlights the importance of education about LBD for emergency room staff and for close medical management by primary care physicians.

The high levels of burden reported by LBD caregivers result not just from the time, effort and energy it takes to provide care, but also from increased emotional and financial burdens. Disrupted sleep, depression and decreased health are also common in dementia caregivers. Social isolation can occur as a result of caregiving responsibilities as well as a lack of emotional support from being in a situation not easily understood by others. Financial burden can result from loss of income, increased medical expenses, and the often unreimbursed costs of in home supportive services, respite care and long term care.

Respondents indicated the types of services and assistance that they would like to have for their relative with LBD and themselves including web based information about LBD and an on-line support group and directories of physicians who were skilled in LBD diagnosis and treatment. Information about nursing homes skilled in LBD care, new medication trials for treatment and local caregiver support groups were also mentioned.

Help On The Horizon
The Lewy Body Dementia Association was formed in 2003 in response to a lack of information on LBD and support resources for LBD families, with the mission to provide LBD outreach and education, raise LBD awareness among the general public and medical professionals, and advance LBD research. Initiatives to be emphasized as a result of the survey include providing physicians with the tools needed to differentiate and treat the four most common causes of dementia (AD, LBD, stroke and frontotemporal dementia), with continuing medical education on LBD to help primary care and other physicians better manage the ongoing care of their patients with LBD and ways to foster better communication among physicians to prevent conflicting medication orders and develop LBD symptom management priorities. For more information, go to

Thu Oct 14, 2010 7:59 pm

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3173
Location: WA
Post Re: LBD Caregiver Burden- More Studies Published
Good article, Robin! Thank you.

Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Thu Oct 14, 2010 9:20 pm

Joined: Sat Oct 06, 2007 4:28 pm
Posts: 694
Location: LA
Post Re: LBD Caregiver Burden- More Studies Published
"We've come a long way, Baby" !!!!

This was my path traveled with ya'll.


"See this lady, she's 85, but she's nice"

Thu Oct 14, 2010 9:51 pm

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: LBD Caregiver Burden- More Studies Published
Exellent article !

Irene Selak

Fri Oct 15, 2010 10:01 am
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