Lewy body dementia: the impact on patients and caregivers
Alzheimer's Research & Therapy
Lewy body dementia: the impact on patients and caregivers
Yael R Zweig 0
James E Galvin 0
0 Departments of Neurology, Psychiatry and Population Health, Alzheimer Disease Center, New York University School of Medicine , New York, NY 10016 , USA
Lewy body dementia (LBD) is the second most common neurodegenerative dementia in older adults, yet there remains a delay in diagnosis that limits healthcare providers' ability to maximize therapeutic outcomes and enhance patient and caregiver quality of life. The impact of LBD on patients includes limiting the potential exposure to medications that may cause adverse outcomes, and addressing how the disease manifestations, such as autonomic features and behavior, affect quality of life. LBD impact on caregivers has been discussed to a greater degree in the literature, and there is clear evidence of caregiver burden and grief associated with disease manifestations. Other common caregiving concerns, such as access to care, prevention of hospitalization, managing behavior, and reviewing prognosis and nursing home placement, are important to comprehensively address the needs of patients with LBD and their caregivers.
The Lewy body dementias (LBDs) are the second most
common form of dementia in older adults after
Alzheimer’s disease (AD) [
]. LBD affects approximately 1.3
million Americans , although this may underestimate
the true burden of disease due to the lack of timely and
adequate diagnosis. LBD is an umbrella terminology that
encompasses both Parkinson’s disease dementia (PDD)
and dementia with Lewy bodies (DLB), with the difference
being one of timing of onset between the cognitive and
motor features. In this article, we will use LBD to
characterize both groups unless it is specifically necessary
to differentiate. LBD prevalence rates approach 5% in the
elderly population and make up to 30% of all dementia
]. Despite considerable research and defined
diagnostic criteria, large autopsy series continue to highlight
low diagnostic sensitivity for the clinical syndrome of LBD
in patients presenting with a dementia syndrome, even
among expert clinicians in specialized centers [
articles, including many in this special issue, address the
signs, symptoms, biomarkers, pathologies, and mechanisms
that are associated with LBD; all too often, however, the
impact of disease on patient and family caregivers is
overlooked. LBD includes a combination of cognitive, motor,
autonomic, and behavioral features that when present
individually or in combination often lead to delays in
correct diagnosis with prescribing of medications that can
have potentially serious adverse events. LBD may further
cause diminished quality of life (QOL), caregiver burden,
and specific care challenges for patients, caregivers, and
providers distinct from those of other forms of dementia.
This review will discuss the personal experience of LBD
from the perspective of patients and caregivers. The material
is based on the expertise of the authors, surveys of LBD
caregivers, as well as a review of the literature using
PubMed. The search was performed on peer-reviewed
journals where the primary language was English over a
10-year period (January 2003 to December 2013).
Delay in diagnosis
In clinical practice, patients and caregivers are not well
informed about the differences between age-associated
cognitive slowing, dementia as a general terminology,
and the most common form of dementia - AD. It is a
common misconception that memory loss is a normal
part of the aging process [
]. AD affects 5.2 million
adults in the United States, compared to approximately
1.3 million with LBD [
]. The Alzheimer’s Association
has a policy and advocacy arm that lobbies for increased
government funding, and the National Institute of
Health and the National Institute on Aging have recently
provided close to $45 million in new funding for AD
research . Moreover, in 2012 the National Institute of
Health supported $154 million in Parkinson’s disease
]. While the body of evidence that comes
from AD and Parkinson’s disease research theoretically
has implications for LBD, the crossover potential to
generalize findings may be limited due to the unique
symptomatology in LBD and the competing adverse effects
of medications to control cognitive, mood, motor, behavioral,
and autonomic symptoms.
Despite advocacy from organizations like the Alzheimer’s
Association and Lewy Body Dementia Association (LBDA),
patients, caregivers, and even some clinicians may not buy
into the benefits of early diagnosis and treatment of
cognitive disorders [
]. LBD in comparison to AD is
often poorly understood and many patients and
caregivers are less knowledgeable about the disease.
Physicians may know about the disease manifestations and
treatment but not prognosis or community resources
]. Even with some scientific advances in biomarkers
and imaging, LBD remains largely a clinical diagnosis
and therefore requires knowledge and skill by a clinician
to make a formal diagnosis.
Caregivers of patients with dementia of all types
express feelings of uncertainty and disorganization around
the diagnostic process [
]. The LBDA conducted an
online survey of LBD caregivers to better understand
challenges that they face in diagnosis and day to day
management of patients. Most respondents reported
seeing multiple physicians over many visits before a LBD
diagnosis was given, with close to 70% reporting more
than three doctors were consulted. On average it took
physicians four office visits to make the diagnosis, with
33% of the respondents reporting more than six office
visits. The majority of survey respondents had received a
diagnosis within 1 year (51%), and some even in the first
month (19%), but a sizable minority of patients (31%)
did not receive a diagnosis for more than 2 years [
One of the contributing factors to the delay in
diagnosis is the wrong initial diagnosis given by clinicians. The
LBD caregiver survey found that an initial diagnosis
other than LBD was given in 78% of cases: Parkinson’s
disease (39%), AD (26%), frontotemporal degeneration
(4%), mild cognitive impairment (6%), or other
unspecified dementia (12%), and primary psychiatric diagnoses
(24%). The initial LBD diagnosis was made by a
neurologist the majority of the time (62%), followed by
psychiatrists, geriatricians, psychologists and, lastly, primary
care providers. Once the diagnosis was established,
around 50% of LBD patients had to see two or more
clinicians for symptom management and 58% of
caregivers reported difficulty with managing the care among
different providers [
A relatively common refrain heard after an initial
diagnosis when many patients return to other providers is
‘They don’t even know what Lewy body dementia is’.
The LBD caregiver survey supports this, with 77% of
caregivers reporting difficulty finding a physician who
knew about treating LBD [
]. It has also been
hypothesized that this lack of knowledge is isolating for
caregivers and they are less likely to receive support from
others in the community at large . Twenty-five
percent of LBD caregivers have reported that no one
understands what they are going through and as a result 40%
report feeling isolated [
]. It should be noted that this
survey only included LBD caregivers and no direct
comparison with other forms of dementia can be made. A
follow-up survey of caregivers of patients with different
forms of dementia is underway and hopefully can
provide direct comparisons.
Improving clinical diagnosis
A clinical diagnosis of LBD is largely made based on
criteria established by the Consortium on DLB
International Workshop for the Clinical Diagnosis of DLB [
and the Movement Disorder Society Task Force
Guidelines for PDD [
]. Early features of LBD help to
distinguish it from other neurodegenerative and psychiatric
disorders and collecting a comprehensive history from
the caregiver is one of the best first steps in diagnosis.
Improving clinical diagnosis is particularly important to
avoid medications that can exacerbate symptoms or
cause poor health outcomes and even death.
Additionally, treatment options such as cholinesterase inhibitors
can be therapeutically very beneficial . Early
diagnosis also helps to provide early caregiver support and link
caregivers to needed resources in the community. One
example of a tool available to improve clinical diagnosis
is the Lewy Body Composite Risk score for which a
cutoff score of 3 provides a sensitivity of 90% and specificity
of 87% to suggest Lewy body pathology as the
underlying cause of dementia [
]. The Mayo Fluctuations
] and Mayo Sleep Questionnaire [
are also helpful in evaluating for other features such as
cognitive fluctuations and REM sleep behavior disorder
that otherwise are difficult to quantify clinically. A
comprehensive history also helps to establish autonomic
dysfunction that may have been previously explained by age
or other medical phenomenon.
A comparison of DLB with AD regarding early
cognitive symptoms suggests that memory impairment was
reported 57% of the time in the DLB compared to 99%
in the AD group. The DLB group reported early visual
hallucinations, depression, problem solving difficulty,
gait problems, and tremor and stiffness. Of the DLB core
features, hallucinations were the most common
symptom prior to an initial evaluation, followed by
parkinsonism and cognitive fluctuations [
]. This is consistent
with other reports of extrapyramidal signs, cognitive
fluctuations, hallucinations, and sleep disturbances as
predictors of DLB [
Once a diagnosis of LBD is made, using a collaborative
approach in the outpatient setting to manage patients is
particularly valuable. LBD patients and caregivers use
more resources in long-term residential care, and
require more outpatient care, informal care, community
services, and pharmacologic therapy than AD patients
]. Social workers who function either as geriatric care
managers, provide counseling, or coordinate concrete
services are vital resources. In our experience, locked
memory care units for AD patients who wander may not
be necessary or appropriate for someone with LBD due
to their physical limitations. Additionally, the behavioral
disturbances common in LBD may exclude patients from
many of these units, so navigating options with an expert
is helpful. It is also beneficial for patients and caregivers to
have a clinician easily available by phone in the outpatient
setting to prevent unnecessary hospitalization, manage
acute behavioral episodes, and provide guidance on
Impact of disease on the patient
Exposure to medications and serious adverse events
As discussed, there may be a delay in timely diagnosis of
LBD so patients with behavioral manifestations may
inadvertently be treated with a typical neuroleptic or
atypical neuroleptic with D2 receptor antagonism, which can
worsen parkinsonism, and exacerbate other features such
as sedation and orthostatic hypotension [
]. The greatest
concern with the use of typical neuroleptics is neuroleptic
malignant syndrome (NMS), which may be fatal. NMS is
caused by central blockade of dopamine and includes
muscle rigidity, hyperthermia, and autonomic instability.
It can also occur from certain anti-emetics such as
]. While NMS is perhaps the most serious
side effect, a similar but more common adverse reaction,
neuroleptic sensitivity reactions, can be seen in DLB, PD,
and PDD. Neuroleptic sensitivity reactions, which can
occur in 30 to 50% of DLB patients, include sedation,
increased confusion, rigidity, and immobility that may occur
after taking a neuroleptic medication. They are just as
likely to occur in patients with mixed pathology including
AD, supporting the need for accurate diagnosis [
Management of LBD should take into account
withdrawal of medications that may potentially exacerbate
parkinsonism or worsen cognition, such as medications
with anticholinergic or antidopaminergic mechanisms of
]. This involves the careful weighing of risk
versus benefit as patients with disabling tremor or autonomic
features such as siallorhea or urinary incontinence may
benefit from an anticholinergic medication. Behavior that
interferes with patient care or safety, or safety of the care
provider, likely warrants an antipsychotic agent despite the
potential risks, including the black box warning of
increased risk of death and/or elevated blood sugars.
Parkinsonism that limits independence or mobility may benefit
from carbidopa-levodopa, and the trade-off may be
hallucinations or exacerbation of behavioral features.
Antiemetic drugs that may be necessary for other conditions,
such as prochlorperazine, promethazine, and
metoclopramide, can worsen parkinsonism. REM sleep behavior
disorder that interferes with good quality sleep or puts the
caregiver at risk for injury should be treated, but rare
events that are not concerning may not warrant a
medication such as clonazepam, which can increase risk of falls
in older adults. Patients with LBD in the early stages can
provide input on how bothersome a symptom may be to
them, which clinicians should use to guide clinical
decision making about treatment.
Patient quality of life
QOL indicators in patients with dementia have been
shown to be associated with inner strength and patients
more likely to complete instrumental activities of daily
living (IADL) exhibit higher levels of QOL [
evidence on QOL in patients with LBD is lacking, but one
study that did seek to investigate QOL found that DLB
patients were less able to self-report QOL compared to
AD patients with similar cognitive performance [
Caregivers’ assessments of patient QOL were lower than
patient self-reporting. However, regardless of whether
the patient or caregiver determined QOL, the DLB
patients scored lower on QOL measures compared to
AD patients. One possible explanation for this was the
higher apathy seen in DLB. Caregivers rated DLB
patients to be in a health state equal to or worse than
death in 24% of cases, compared to 6% in the AD group.
QOL determinants in DLB patients included the
Neuropsychiatric Inventory (NPI) score, apathy, delusions,
dependency with IADL, and whether the patient was living
with a caregiver [
While each LBD patient and caregiver may report their
own individual concern about which disease feature most
affects QOL, autonomic symptoms and behavioral
features are particularly common complaints. Constipation
may precede a LBD diagnosis by more than a decade [
Autonomic features of LBD, especially fatigue, urinary and
bowel symptoms, postural dizziness, and siallorhea are
clinically very bothersome to patients, and have a
detrimental effect on QOL [
]. Autonomic symptoms have
been associated with poorer physical and social function
and overall perception of general health .
Recurrent well-formed visual hallucinations are one of
the core features of LBD, and may occur in up to 80% of
]. One study found that the most common
visual hallucinations included fully formed adults or
children (84%), animals or insects (37%), and objects
]. Hallucinations were more likely to occur
early in the disease course, within the first 5 years of
diagnosis. Some patients have reported pleasurable
Early misperceptions and family misidentification are
more likely in patients with DLB, and can occur later in
the disease course in those with a mixed pathology with
]. Patients may exhibit hallucinations even with
milder cognitive deficits, and may therefore be
concerned about reporting this to family or clinicians.
Capgras syndrome, a delusion that a person is replaced by
an imposter with a similar appearance, is also common
in DLB [
] and can be quite disturbing to patients.
Patients with DLB and Capgras syndrome are more likely
to have visual hallucinations and anxiety [
Clinically, patients with LBD may have more insight
into their cognitive deficits when compared to patients
with AD. When insight is retained during hallucinations,
patients may be able to understand the hallucinations
are not actually present and are therefore less disturbing.
In addition, because episodic memory deficits can be
improved with cuing, patients can use strategies to
help jog their memory such as appointment books and
Patients with dementia want their concerns to be
validated by providers [
]. Open communication helps to
strengthen the relationship between the provider and
patient, which is also why patients should be a part of all
discussions about diagnosis and treatment planning.
Impact of disease on family caregivers
Caregiver burden, grief, and well-being
It is important to understand caregiver burden and
overall well-being in LBD due to the repercussions chronic
stress and burden have on both caregiver and patient
health outcomes. The LBDA caregiver survey found that
over 90% of LBD patients were unable to perform
certain IADLs, such as shopping and cooking, and over
60% needed help with more basic activities of daily
living. Caregiver respondents reported medium to high
levels of burden, with the most frequent burden items
including fear of the future for their loved one, stress
related to being a caregiver with other personal
responsibilities, social life interference, and uncertainty. Spousal
caregivers had higher burden scores than non-spousal
caregivers. The factors most likely to contribute to
caregiver burden were sleep and mood disturbances [
When patients with DLB and AD who have similar
cognitive deficits are compared, the DLB group exhibits
more behavioral features with a higher frequency of
hallucinations, apathy, and appetite changes based on the
NPI. The DLB group caregivers endorse higher caregiver
distress compared to AD caregivers, and high distress is
associated with delusions, hallucinations, anxiety, and
apathy. In this study, no association was reported between
caregiver distress and performance on a functional scale,
although the DLB group fared worse on activities of daily
living and IADL scales [
These findings are consistent with other reports that
LBD caregivers are more distressed than AD or vascular
dementia caregivers [
]. More specifically, PDD caregivers
were the most distressed but there was no significant
difference between this group and the DLB group. Similarly, the
NPI findings consistent with depression, anxiety, delusions,
and apathy were associated with caregiver distress across all
dementia groups, and delusions and hallucinations
contributed to caregiver stress in PDD and DLB. Daytime
somnolence, one feature of cognitive fluctuations seen in LBD,
was also associated with caregiver stress [
Access to care
Caregivers of patients with LBD are often younger than
those with AD. The mean age of caregiver respondents
to a survey investigating LBD caregivers was 55.9 ±
12 years and was predominately female [
spousal caregivers have unique challenges as they may
still be caring for their parents and/or children in
addition to their spouse. Support groups, especially in
smaller cities or rural areas, may be geared towards AD
or PD and therefore are not as valuable due to the
specific challenges in LBD. Patients with LBD may have had
to retire early due to cognitive or motor symptoms, and
their financial and retirement plan may not have taken
into account dementia at a younger age of onset.
Patients and caregivers with dementia report a delay in
receiving needed support services due to a lack of
knowledge by providers. Specialized memory centers are
generally better at helping caregivers access services, but
there can be a referral delay [
]. Despite clear evidence
of caregiver burden, only 29% of LBD caregivers
evaluated by survey reported using paid care in the home
and 21% used an adult day program, with 40% reporting
the need for additional help. Cost of care is a concern,
although a low percentage were attending a support
group (23%) or counseling (12%) [
], which are more
likely to have less financial cost. The survey was
accessible via the LBDA website so presumably caregivers
who completed the survey may be even better informed
about the disease and manifestations, yet still did not
have adequate support.
The multiple symptom burdens that LBD patients
experience complicates the provision of care. Clinical
management is simplified when clinicians focus on the
symptom that is most disturbing to the patient, while
incorporating input from the caregiver as well. Even more
challenging is when the patient and caregiver disagree - for
example, a patient with well-formed visual hallucinations
may not be disturbed by this phenomenon while caregivers
may rate this as a primary concern. Furthermore, caregivers
may be more disturbed by cognitive fluctuations that the
patient may not recognize. Autonomic features, particularly
symptomatic orthostatic hypotension, constipation, urinary
symptoms, and siallorhea, tend to be equally disturbing to
patients and caregivers. Clear discussion about symptom
management is crucial due to the paradox often present
with medications for one symptom that exacerbates a
As noted, psychiatric features can be an early sign of LBD
and are more likely to be present in the early stages when
compared to AD [
]. LBD patients are more likely to
exhibit high scores on the NPI for hallucinations, night-time
behavior, and apathy. Delusions can revolve around
stealing, strangers living in the home, and being in danger, and
may get worse as the disease progresses [
particular challenge with delusions is that they are false and
‘fixed’; therefore, the patient truly believes it to be the case
and it can be difficult or impossible to convince them
otherwise. They may also be centered on a loved one, so
the spouse who already may be burdened also has to cope
with a focused delusion. Delusions of spousal infidelity or
Capgras syndrome are particularly challenging to spouses.
Prevention of hospitalization
Management goals for all patients with dementia should
include avoidance of hospitalization. This is particularly
important for LBD patients if they present with
behavioral manifestations due to the risk they may be given a
neuroleptic and suffer adverse outcomes. As in all
dementias, underlying medical illness can initially present
as worsening confusion. This presentation can be
challenging in LBD as it can be difficult to distinguish from
the fluctuating disease course; however, reports of any
acute cognitive decline should trigger a medical
investigation. Patients with LBD may be more likely to have a
delirium episode preceding diagnosis and have
recurrent episodes of delirium when compared to AD [
Sixty-four percent of LBD caregivers self-reported a
crisis situation had occurred in the prior year, and the
most common place where help was sought was a
hospital emergency room. Twelve percent of respondents
additionally needed inpatient psychiatric care [
again highlights the need for outpatient clinicians to be
easily accessible and to utilize a collaborative approach
where possible to prevent unnecessary hospitalizations.
Surgical intervention for patients with Lewy body dementia
Surgical interventions are a common area of concern for
patients and caregivers. Dementia in and of itself, and a
diagnosis of LBD in particular, does not preclude
necessary surgical interventions. This can become more of a
gray area when optional procedures such as knee or hip
replacements are considered. Clearly, arthritic joints can
severely limit QOL but there is a balance when
considering potential repercussions from anesthesia and the
rehabilitation potential with a pre-existing cognitive and
functional impairment. The relationship between general
anesthesia and LBD specifically has not been robustly
examined. Patients with LBD may respond poorly to
certain anesthetics and experience postoperative delirium
and/or functional decline [
]. Patients with Parkinson’s
disease need careful oversight of their drug dosing
regimen so it is impacted as little as possible pre- and
]. A discussion with both the surgeon
and anesthesiologist prior to surgery about the LBD
diagnosis is prudent.
Prognosis and nursing home placement
Patients and families expect clear and concise
information about dementia prognosis and are often
disappointed with the divergent responses from clinicians.
Prognosis is difficult from the clinician perspective
because of the significant variability among patients and
the multitude of contributing factors to health outcomes.
Additionally, there is conflicting information about LBD
progression, with an average duration of 5 to 7 years and
range of 2 to 20 years [
]. Patients and caregivers are
sometimes relieved to be given a diagnosis other than
AD, due to lack of knowledge about other degenerative
dementias and a sometimes false perception that
anything else is preferable. Because LBD is often
misdiagnosed or underdiagnosed, there may be a different sense
of relief with diagnosis to finally receive an answer that
explains the constellation of symptoms.
Patients with DLB, particularly men, have an increased
mortality risk compared to patients with AD. One study
found the median age at death among DLB patients to be
78 years, compared with 85 years for those with AD.
Other contributing factors to DLB mortality include at
least one APOE4 allele, other comorbid conditions,
extrapyramidal signs, and difficulty completing activities of
daily living [
]. The presence of orthostatic hypotension,
but not other signs of autonomic dysfunction such as
constipation or urinary incontinence, has also been associated
with increased mortality risk [
]. DLB patients with
extrapyramidal signs and depression are more likely to
enter a nursing home, although those individuals with a
tremor-predominant movement disorder may be at a
lower risk than those with akinetic-rigid presentations.
Once in a nursing home, DLB patients have increased
mortality rates compared to AD patients [
Other comparison studies evaluating survival
differences in patients with AD and DLB have found that
when comparing the groups based on Mini-Mental State
Examination score, the survival time is shorter in DLB
]. The evidence suggests that DLB patients may have
worse mortality outcomes; however, the rate of cognitive
decline over time is similar between DLB and AD
]. There is no difference in mortality rates or
time to nursing home placement between patients with
pure forms of DLB compared to mixed pathology with
both DLB and AD [
Similarly, when comparing nursing home admission
(NHA) rates in patients with mild DLB and AD, men
with DLB had the shortest time until NHA. The use of
antipsychotic medication and the duration of symptoms
prior to DLB diagnosis were associated with an
increased rate of NHA, whereas use of acetylcholinesterase
inhibitor had an inverse relationship with NHA. Patients
with mild DLB experience durations of NHA almost
2 years shorter than those with AD [
While end of life prognosis can be difficult, providers
can council patients and families to expect an earlier loss
of independence in DLB compared to other dementias
]. Clinically, caregivers often seek placement when
care challenges such as behavioral manifestations and/or
incontinence are present, both of which can be a
significant area of concern in LBD. Nursing home placement
is an especially difficult decision in the LBD population
because often patients and caregivers have already
experienced a lack of provider knowledge about the disease.
There is a concern that the patient will be
overmedicated, or medicated inappropriately. Providing ongoing
education and utilizing information from the LBDA,
such as the ‘medications to avoid’ wallet card or
documenting ‘allergies’ to neuroleptics, may be useful. Staff
education, especially to direct care providers in
longterm care such as nurses and nursing assistants is
LBD is a complex and multi-symptom disorder that
diminishes patient QOL and increases caregiver burden.
The impact on patients and caregivers is tremendous in
that it affects not just cognition, but includes motor,
behavioral, and autonomic features. In addition to coping
with the disease itself, there is a lack of knowledge both
in the public and private sphere, which increases feelings
of isolation and lack of trust in the medical
establishment. The delay in diagnosis increases healthcare cost
and utilization and combined with increased rates of
caregiver burden due to behavioral manifestations and
loss of function further supports the need for increased
awareness of the disease effects.
LBD patients have unique care challenges and there is a
resultant need to always consider risk versus benefit in
clinical decision making such as medication management,
hospitalization and surgical intervention. The prognosis for
patients in terms of mortality and nursing home placement
are poorer than those with AD so clinicians must always
keep the patient’s QOL in the forefront when making
decisions about LBD symptom management. It is important to
always consider LBD from the perspective of patients and
caregivers because of the symptom burden and, without a
cure at this time, management must be individualized to
each patient to maximize outcomes.
Note: This article is part of a series on Lewy Body Dementia, edited
by Ian McKeith and James Galvin. Other articles in this series can be
found at http://alzres.com/series/LewyBodyDementia.
AD: Alzheimer’s disease; DLB: Dementia with Lewy bodies; IADL: Instrumental
activities of daily living; LBD: Lewy body dementia; LBDA: Lewy Body
Dementia Association; NHA: Nursing home admission; NMS: Neuroleptic
malignant syndrome; NPI: Neuropsychiatric inventory; PDD: Parkinson’s
disease dementia; QOL: Quality of life.
The authors declare that they have no competing interests.
This project was supported by grants from the National Institutes of Health
(P30 AG008051 and R01 AG040211), Michael J Fox Foundation, and the New
York State Department of Health (DOH-2011-1004010353).
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10. 1186/alzrt251 Cite this article as: Zweig and Galvin: Lewy body dementia: the impact on patients and caregivers . Alzheimer's Research & Therapy 2014 , 6 : 21