Parkinson’s Disease Caregiving - Family Caregiver AlliancePARKINSON’S DISEASE FACTS What is...
Transcript of Parkinson’s Disease Caregiving - Family Caregiver AlliancePARKINSON’S DISEASE FACTS What is...
Parkinson’s Disease Caregiving: A Descriptive Report
Parkinson’s Disease Caregiving: A Descriptive Report
Prepared by: Nancy Giunta, M.A., Research Consultant
Monique Parrish, Dr.P.H. Sara Adams
Statewide Resources Consultant Family Caregiver Alliance
690 Market Street, Suite 600 San Francisco, CA 94104 Phone: (800) 445-8106
Fax: (415) 434-3508 www.caregiver.org
March 2002
This work was supported by funding from the California Department of Mental Health, contract number 00-70016-000.
© 2002 Family Caregiver Alliance
TABLE OF CONTENTS
LIST OF TABLES ........................................................................................................................ ii
LIST OF FIGURES ...................................................................................................................... ii
EXECUTIVE SUMMARY ......................................................................................................... iii
Key Findings..................................................................................................................... iv
INTRODUCTION......................................................................................................................... 1
PARKINSON’S DISEASE FACTS............................................................................................. 3
What is Parkinson’s Disease? .......................................................................................... 3
Symptoms of Parkinson’s Disease ................................................................................... 3
Treatment of Parkinson’s Disease................................................................................... 4
METHODS .................................................................................................................................... 4
FINDINGS..................................................................................................................................... 5
Demographic Profile of PD Care Recipients .................................................................. 5
Care Recipient Functional and Behavioral Impairments and the Impact on Caregivers.......................................................................................................................... 7
ADL/IADLs for PD Care Recipients Compared with Other Care Recipients............ 9
Demographic Profile of PD Caregivers......................................................................... 10
Demographic Comparison with Non-PD Caregivers .................................................. 13
PD Caregiver Well-Being ............................................................................................... 14
Identified PD Caregiver Problems at Assessment ....................................................... 15
CONCLUSION ........................................................................................................................... 17
APPENDIX A: Population and Counties Served by the 11 California Caregiver Resource Centers ............................................................................................................................. 20
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LIST OF TABLES
Table 1. Characteristics of PD Care Recipients Compared with Other Care Recipients .............. 6 Table 2. Memory and Behavior Problems of PD Care Recipients ................................................ 9 Table 3. ADL, IADL, and Behavior/Memory Problems Exhibited by PD and Other Care
Recipients....................................................................................................................... 10 Table 4. Selected Characteristics of PD Caregivers Compared With Other Caregivers ............. 12
LIST OF FIGURES Figure 1. Functional Problems Experienced by PD Care Recipients ............................................ 7 Figure 2. Functional Problems Moderately or Extremely Upsetting to PD Caregivers ................ 8 Figure 3. Percentage of PD Caregivers by CRC Site................................................................... 11 Figure 4. Identified PD Caregiver Problems at Assessment........................................................ 16 Figure 5. Services Planned for PD Caregivers............................................................................. 16
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EXECUTIVE SUMMARY
This report describes caregivers of individuals with Parkinson’s disease (PD), who
entered California’s Caregiver Resource Center (CRC) System in 1999. The CRC System
provides caregiving services ranging from specialized information and referral to respite care and
education throughout California’s diverse cultural and geographic regions. Demographic
information and a description of the significant functional and memory/behavior problems
experienced by persons with PD are presented in this report, together with data on the emotional
responses to these problems by PD caregivers. In addition, PD caregivers are profiled
demographically and descriptively, with attention to the needs, health status, and perceptions of
this unique group. Similarities and differences between PD caregivers and other caregivers
served by the CRC system are reviewed throughout the report.
Data for this report were collected in 1999 by California’s eleven Caregiver Resources
Centers (CRCs), as part of the uniform caregiver assessment process. Following an initial
intake, family consultants obtained this information through face-to-face interviews, which
generally took place in the caregiver’s home.
Variables used in the analyses included the following: demographic characteristics of
caregivers and care recipients (including the referral source through which caregivers were
referred to the CRC); major problems and needs of care recipients; the length of time providing
care; and several caregiver health and well-being measures including self-reported physical
health and burden, caregiver distress in response to care recipient functional needs and
behavioral and memory problems, and the Center for Epidemiological Studies scale for
depression. Analysis of these variables consisted primarily of frequencies and descriptive
statistics to provide a comprehensive look at the needs of PD caregivers.
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The sample for this report consisted of 324 caregivers of persons with Parkinson’s
disease, or nine percent of all caregivers assessed by the CRCs in 1999. PD caregivers ranged in
age from 24 to 87 years old, with an average age of 64. Most caregivers were married (85%) and
female (84%), and therefore, were most often the wife (55%) or daughter (22%) of the care
recipient. Eighty-six percent of PD caregivers were white while seven percent were Latino.
African American and Asian American PD caregivers each consisted of three percent of the PD
caregivers completing the assessment. Twenty-four percent of PD caregivers were employed
either part or full-time at the time of assessment; however, most caregivers were retired and
consequently were no longer employed. Approximately one in five PD caregivers reported
either quitting their jobs (13%), or reducing hours at work (6%) to provide care.
Nearly all care recipients (98%) for this group of PD caregivers had a confirmed
diagnosis of Parkinson’s disease. Most were married (76%), an average age of 76 (ages ranged
from 39 to 92 years of age), and male (69%). The majority of care recipients (88%) lived with
their caregivers.
Key Findings
Caregivers
The typical PD caregiver was a 64 year-old white woman who had been caring for her husband for three years or more.
On average, PD caregivers were providing 96 hours of care per week, or 14 hours per day, to their care recipients.
PD Caregivers experienced high levels of depression, indicated by an average score of 19.88 on the Center for Epidemiological Studies Depression (CES-D) scale. (A score of 16 or higher on the CES-D demonstrates evidence of clinically depressive symptoms.)
Care Recipients
The typical care recipient was a 76 year-old white man receiving care from his wife at home.
PD care recipients were predominantly male (69%) compared to non-PD care recipients (47%).
Approximately half of care recipients (51%) reported annual household incomes of less than $30,000.
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PD Caregivers Compared with Other Caregivers
In comparison with caregivers of individuals with other brain impairments, PD caregivers were older, had been caring for their loved one for a longer period, and were more likely to be caring for a spouse.
PD caregivers reported increased depression, arthritis, asthma, diabetes, heart trouble, and high blood pressure, compared to other caregivers
PD Caregiver Identified Needs
Family Consultants reported the most common problems for PD caregivers at assessment were the need for respite (85%), emotional support (83%), and behavior management (32%).
The most common services planned for PD caregivers by Family Consultants were: family consultation (87%), follow-up information & referral (73%), in-home respite (70%), and support groups (48%).
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INTRODUCTION
Between 500,000 and 1.5 million people have Parkinson’s disease (PD) in the United
States (National Institute of Neurological Disorders, 2000; National Parkinson Foundation,
1998). Data indicate approximately 50,000 new cases are reported each year, with the majority
of cases occurring among persons age 60 years and older (American Parkinson’s Disease
Association, 2000). As the population of the United States ages, the incidence of Parkinson’s
disease is expected to rise too. This change will affect the number of people needed to care for
persons with this disease, especially families, who currently provide the majority of care for
persons with Parkinson’s disease.
Families and informal caregivers play a crucial role in meeting the long-term care needs
of individuals with all types of brain-impairments. Presently, an estimated three million family
and informal caregivers are providing 2.8 billion hours of care annually to individuals with
cognitive impairment in California (Caregiver Resource Center System, 2001).1 California’s
Caregiver Resource Center (CRC) system provides support and assistance to approximately
12,000 of these family caregivers throughout California each year (Family Caregiver Alliance,
2000).
This report presents an overview of PD, and an in-depth examination of 324 caregivers of
persons with Parkinson’s disease, and their care recipients, who entered the CRC system during
1999 and participated in an assessment interview.2 PD care recipients are profiled,
demographically and descriptively, as are PD caregivers, with special attention given to analysis
of the latter group’s caregiving needs, health status, and perceptions of caregiving role.
1 Policymakers define family caregiver in various ways. For the purposes of this report, the term informal caregiver, which generally refers to one who provides care without pay and whose relationship to the care recipient is due to personal ties, will be incorporated into the term family caregiver, which most often describes family, friends, and neighbors. 2 Care recipient is used throughout this report to describe the person with Parkinson’s disease.
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Similarities and differences between PD caregivers and other caregivers served by the CRC
system are also reviewed throughout the report.
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PARKINSON’S DISEASE FACTS What is Parkinson’s Disease?
Parkinson’s disease is a neurological disease that primarily affects body movement
(Jahanshani and Marsden, 2000). As the disease progresses, it destroys nerve cells in the brain.
Some of the affected cells are responsible for producing the chemical dopamine, which
communicates body movement signals from the brain to the body. Dopamine also controls the
amount of the chemical acetylcholine in the brain. With deficient levels of dopamine,
acetylcholine builds up causing tremors and muscle stiffness. Common symptoms include a
shuffling-like gait, tremors of the arms and legs at rest, stooped posture, and cognitive problems
(Jahanshani and Marsden, 2000). PD is most common in persons over age 60; however,
symptoms of PD may occur before a person reaches 40 years of age.
Symptoms of Parkinson’s Disease
While not all persons with PD develop the same symptoms, the primary symptoms of PD
include the following:
Rigidity and/or stiffness – experienced by 89% to 99% of persons with PD. Tremors – between 69% and 100% of people with PD experience tremors;
however, tremors are not generally the cause of complete disability. Tremors often start on one side of the body with the hand and may involve the arms, feet, legs, and chin.
Slow movement or loss of movement – often called an “on-off” symptom. This
loss of movement symptom may involve “freezing,” an inability to move for several seconds or minutes; however, general slowness in movement is more common and occurs in 77% to 98% of persons diagnosed with PD.
Balance and walking problems – may result in a shuffling gait and an increased
risk for falls. A stooped posture may also develop but not be apparent until many years after initial diagnosis.
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Other PD symptoms include depression, memory problems and/or mental confusion,
dementia, speech problems, and swallowing problems. Those who develop dementia associated
with the disease are likely to be older and have developed PD later in life. According to the
Hoehn and Yahr scale, PD has five stages (Jahanshani and Marsden, 2000):
Stage I: Symptoms on one side of the body Stage II: Symptoms on both sides of the body Stage III: Balance is impaired Stage IV: Requires assistance with mobility and other symptoms are severe Stage V: Non-ambulatory, wheelchair bound
Treatment of Parkinson’s Disease
There is no cure for PD. Drug therapy however is the most common form of symptom
management and has been shown to be effective for ten years or more. When symptoms become
unmanageable or extremely disabling, surgery is sometimes considered for people under the age
of 70, who are in good health and do not show symptoms of cognitive impairment.
Currently, three types of surgery are used to treat PD patients: lesioning (ablative), deep
brain stimulation (DBS), and restorative (transplants). In the United States however, only one
form of DBS (stimulation of the thalamus) and lesioning surgery has been approved. Restorative
surgery and other forms of DBS have yet to be approved and are considered experimental.
METHODS
Data for this report were collected in 1999 by the eleven CRCs as part of the uniform
caregiver assessment process. The assessment tool gathers information about the caregiver and
care recipient to determine aspects of the caregiver’s situation which may threaten the
caregiver’s everyday functioning and long-term well being (Statewide Resources Consultant,
1997).
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The following steps were taken to prepare for this report’s data analysis: first, the 1999
statewide assessment tool data were coded, cleaned, and entered; second, caregivers caring for
someone with PD were identified; and finally, an independent database of PD caregiver cases
was constructed and a series of statistical tests using SPSS v. 9.0 were performed.
Variables selected for analyses included demographic characteristics of the caregivers
and care recipients, the source(s) that referred the caregiver to the CRC, the major problems and
needs of care recipients identified by caregivers at the time they first called the CRC, the length
of time providing care, and a series of caregiver health and well-being measures including self-
reported physical health, self-reported burden, and the Center for Epidemiological Studies (CES-
D) scale for depression among others. If the PD care recipient experienced certain functional
needs and/or behavioral and memory problems, the level of distress felt by the caregiver as a
reaction to the specific occurrence was also reported. Frequencies and descriptive statistics were
used in this report to examine the needs of PD caregivers.
FINDINGS
Demographic Profile of PD Care Recipients
Demographic characteristics of PD care recipients are shown in Table 1. The typical PD
care recipient was a 76-year-old married man living with his caregiver wife. Over two-thirds
(69%) of the care recipients were male (compared to 47% of non-PD car recipients), and most
were married (76%) or widowed (18%). Care recipients ranged in age from 39 to 92
(median=78) years. One in four care recipients was age 70 or younger.
At the time PD caregivers contacted the CRC system, nearly all (98%) of their respective
care recipients had a confirmed diagnosis of PD. Years since the onset of PD ranged from less
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than one year to 40 years, with an average length of 8 years. One quarter of all care recipients in
the sample had been living with PD for more than ten years.
Table 1. Characteristics of PD Care Recipients Compared with Other Care Recipients Care Recipient Characteristic PD Care Recipients
(N = 324) Other Care Recipients*
(N = 3116) Age
Mean (Range)
76 (39-92)
74 (18-104) Gender
% Male
69
47 Marital Status
Married Separated Divorced Widowed Living Together Never Married
76%
0% 4%
18% 1% 1%
57%
1% 7%
30% 1% 4%
Living Arrangement Home alone Home with spouse Home with spouse and other relatives Home with aide Acute care hospital Rehabilitation facility Board and Care Skilled Nursing Facility Other
5%
69% 21%
1% <1%
0% 2%
2% 1%
9%
49% 34%
2% 1% 1% 2% 2% 1%
*Note: Other care recipients refers to persons diagnosed with a brain-impairment other than Parkinson’s Disease
(i.e. stroke or cerebrovascular accident, Alzheimer’s disease, multi-infarct dementia, other degenerative disease/dementia, traumatic brain injury, brain tumor, other non-degenerative disease, MS, amyotrophic lateral sclerosis, or unreported diagnosis) whose caregiver entered the CRC system in 1999. CRC Uniform Database, 1999.
The majority of PD care recipients had some type of advance directive in place in the
form of a durable power of attorney for health (62%) or finances (57%). Approximately half
(51%) of the care recipients with PD received annual household incomes of less than $30,000.
Fifty-one percent of care recipients were enrolled in health maintenance organizations; another
11% received public medical benefits through the Veterans Administration or Medi-Cal.
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Care Recipient Functional and Behavioral Impairments and the Impact on Caregivers
Care recipients with PD experienced an average of ten functional problems from a list of
sixteen items, in the week before the assessment. As demonstrated in Figure 1 however, more
than half of care receivers with PD experienced problems performing thirteen of the sixteen
functional activities. On average, PD care recipients experienced impairment with three of the
five activities of daily living, or ADLs (the basic tasks of everyday life: eating, bathing, dressing,
toileting, and transferring).
Figure 1. Functional Problems Experienced by PD Care Recipients
Source: CRC Uniform Assessment Database (N = 324)
0 25 50 75 100
Taking MedicationsStaying Alone
MobilityDressingBathing
Supervising personal careTransferring from bed/chair
Managing money orPreparing meals
Performing householdUsing Toilet
IncontinenceGrooming
Telephone useEating
Wandering
Percentage of PD Care Recipients
PD caregivers also reported the degree to which they (the caregiver) were upset or
bothered when the care recipient experienced a functional problem. Figure 2 presents the
percent of caregivers who reported being moderately or extremely upset by the functional
problem of the PD care recipient. While only 12% of PD caregivers reported the care recipient
experienced problems with wandering (Figure 1), nearly all (97%) of this group reported being
moderately or extremely upset when wandering occurred (Figure 2).
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Figure 2. Functional Problems Moderately or Extremely Upsetting to PD Caregivers
Source: CRC Uniform Assessment Database (N = 324)
0 25 50 75 100
Taking MedicationsStaying Alone
MobilityDressingBathing
Supervising personal careTransferring from bed/chair
Managing MoneyPreparing meals
Performing choresUsing Toilet
IncontinenceGrooming
Using telephoneEating
Wandering
Percentage of PD Caregivers
Frequent symptoms of Parkinson’s Disease include depression, memory problems, and
mental confusion. PD care recipients in this sample experienced an average of eight memory
and/or behavior problems from a checklist of twenty-five items. Table 2 presents the percent of
PD care recipients who experienced a problem with a particular behavior or memory problem
and if so, the percent of caregivers who were moderately or extremely upset when it occurred.
Nearly two-thirds (63%) of caregivers reported their care recipient appeared sad or
depressed; ninety-six percent of this group reported being moderately or extremely upset by this
behavior. Eighty-eight percent of PD caregivers were moderately or extremely upset by their
care recipients’ waking them or other family members up at night. Interestingly, similar to the
trend demonstrated in the area of functional behaviors, several of the memory and behavior
problems, which occurred infrequently, caused great distress to PD caregivers when they did
occur. For example, all PD caregivers reported that the care recipient commenting about death
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was extremely or moderately upsetting, however, only a relatively small percentage of PD
caregivers (15%) reported the behavior occurring in the week prior to the assessment.
Table 2. Memory and Behavior Problems of PD Care Recipients
Memory and Behavior Problems % YesIf Yes, % moderately or
extremely upset by behaviorTrouble remembering recent events 66 80 Appears sad or depressed 63 96 Waking your or other family up at night 56 88 Forgetting what day it is 56 65 Difficulty concentrating on a task 54 78 Appears anxious and worried 53 91 Losing or misplacing things 50 82 Asking the same question over and over 40 87 Starting, but not finishing, things 36 84 Expressing feelings of hopelessness or sadness about the future 31 92 Comments about feeling worthless or being a burden to others 31 94 Arguing, irritability/complaining 31 96 Crying and tearfulness 30 90 Trouble remembering significant events in 29 87 Talking about feeling lonely 20 98 Unable to communicate 18 95 Engaging in potentially dangerous behavior to self or others 16 98 Doing things that embarrass you 15 98 Commenting about death of self or others 15 100 Aggressive to others verbally 14 98 Comments about feeling like a failure or about not having
worthwhile accomplishments in life 11 94
Talking loudly and rapidly 9 92 Destroying property 6 82 Threats to hurt others 4 93 Threats to hurt oneself 2 100
Source: CRC Uniform Database N=324
ADL/IADLs for PD Care Recipients Compared with Other Care Recipients
PD care recipients differed only slightly in ADL/IADL abilities and behavior/memory
problems, compared to other brain-impaired recipients. For both groups the two most significant
ADL problems were with bathing/showering and dressing. Among IADLs, taking medication
was the most frequently experienced problem for both groups. Nearly two-thirds of PD
caregivers reported the care recipient appeared sad or depressed. This behavior, although
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reported only slightly more often by PD caregivers than other caregivers (63% vs. 57%,
respectively), may be more common among PD care recipients due to muscle stiffness in the
face. Trouble remembering recent events differed somewhat for the two groups in the area of
behavior/memory problems: seventy-eight percent for non-PD care recipients versus 66% for PD
care recipients.
Table 3. ADL, IADL, and Behavior/Memory Problems Exhibited by PD and Other Care Recipients
Impairment
PD Care Recipients N=324
Other Care Recipients* N=3116
ADLs Eating Bathing/showering Dressing Toileting Transferring
45% 69% 71% 55% 67%
38% 69% 64% 46% 45%
IADLs Preparing meals Medications Managing money Household chores Using telephone
61% 78% 65% 60% 49%
64% 73% 72% 62% 49%
Behavior/Memory Appears sad or depressed Waking you or family members up at night Forgetting what day it is Difficulty concentrating on a task Trouble remembering recent events
63% 56% 56% 54% 66%
58% 40% 70% 63% 78%
* Note: See Table 1 for a description of “Other Care Recipients” Demographic Profile of PD Caregivers
In 1999, 324 caregivers of persons with Parkinson’s disease completed a CRC
assessment, representing 9% of all caregivers of brain-impaired adults assessed in the CRC
system that year. The number of PD caregivers varied between CRC sites around the state
(Figure 3) Los Angeles (19%) and Del Oro (18%) CRCs had the highest percentage of
assessments of caregivers caring for individuals with PD. PD caregivers were primarily referred
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to the CRC system by health care providers (25%), social service providers (15%), other brain
damage service organizations (10%), and friends (10%). See Appendix A for a list of counties
and populations served by each CRC.
Figure 3. Percentage of PD Caregivers by CRC Site
Source: CRC Uniform Assessment Database (N = 324)
Del Oro17.9%
Valley13.9%
Orange12.3%
Coast4.3%
Mountain3.7%
Del Mar3.1%
Inland4.6%
Southern5.6%
LA18.5%
FCA 8.3% Redwood
7.7%
The typical PD caregiver was a 64-year old female who was caring for her husband at
home. PD caregivers were predominantly female (84%) and most often the wife (55%) or
daughter (22%) of the care recipient. Caregivers ranged in age from 24 to 87 years with an
average age of 64. PD caregivers were predominantly white (86%), followed by Latino (7%),
African American (3%), and Asian American (3%).
At the time of assessment, nearly nine in ten (88%) PD caregivers lived with their care
recipient. One in four PD caregivers were employed either part-time or full-time. Seventeen
percent of the 242 unemployed caregivers reported quitting their job to provide care. Most
caregivers (36%) had been providing care for three to five years (36%) or six to ten years (25%).
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One in ten PD caregivers had been providing care for 11 years or more. Approximately half of
all PD caregivers (47%) were enrolled in health maintenance organizations.
Table 4. Selected Characteristics of PD Caregivers Compared With Other Caregivers
Caregiver Characteristic PD Caregivers (N = 324) Other Caregivers* (N = 3116) Caregiver Gender
% Female Caregiver Age
Mean (Range)
84
64 (24-87)
75
60 (18-91)
Relationship to Care Recipient Spouse Adult Child**
67% 29%
46% 42%
Caregiver Ethnicity African American Asian American Latino/Hispanic White
3% 3% 7%
86%
7% 3% 8%
81% Marital Status
Married Never married Divorced
85%
7% 6%
74%
8% 10%
Number of Years Providing Care Less than one year 1-2 years 3-5 years 6-10 years 11 years or longer
11% 18% 36% 25% 10%
24% 26% 30% 14%
6% Education
Less than/some high school High school graduate Some college College graduate Post-graduate
8%
31% 32% 22%
8%
8%
27% 35% 20% 10%
Current Employment Status Full-time Part-time Not employed
18%
7% 75%
24% 10% 64%
* Note: See Table 1 for a description of “Other Care Recipients”
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Demographic Comparison with Non-PD Caregivers
PD caregivers differed from caregivers of adults with other brain impairments in several
areas. Demographically, PD caregivers were slightly more likely to be white (86% vs. 81%),
female (84% vs. 75%), older (mean=64 vs. 60), and caring for a spouse than other caregivers
(67% vs. 46%) served by the CRC system. Table 4 compares selected demographic
characteristics of PD with those of caregivers caring for persons with other brain impairments.
PD caregivers were less likely to contact the CRC system as early as other caregivers.
While 50% of non-PD caregivers were assessed by the CRC system within the first two years of
providing care, only 29% of PD caregivers received an assessment during this same period.
Moreover, more than one-third of PD caregivers compared with less than one-quarter of other
caregivers had been caring for their relative for six years or longer.
Employment status differed slightly among PD caregivers compared with other
caregivers. Twenty-five percent of PD caregivers and 34% of other caregivers were employed
full or part-time. PD caregivers were less likely to reduce work hours to meet caregiver needs
compared with other caregivers (6% vs. 10%, respectively), possibly reflecting the higher
retirement rate of PD caregivers compared with other caregivers.
PD caregivers did not fare as well as other caregivers, in terms of mental or physical
well-being. Although all caregivers generally reported the same level of self-reported burden,
PD caregivers had a slightly higher prevalence of self-reported depression compared with other
caregivers (26% vs. 22% respectively), as well as higher rates of medical conditions, including
arthritis, asthma, diabetes, heart trouble, and high blood pressure. These differences may be
associated with the fact that PD caregivers, at the time of assessment, had been caring for their
care recipient for a longer period than caregivers of non-PD care recipients.
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PD Caregiver Well-Being
Physical Health
Caregiving can be physically and emotionally draining, especially when caregiving duties
are demanding and constant. PD caregivers provided an average of 96 hours of care per week to
their care recipients. The vast majority (73%) reported significant health problems. The most
prevalent health problems reported involved arthritis (27%), self-reported depression (26%), high
blood pressure (23%), and heart trouble (15%). One-third of PD caregivers reported their
overall health as fair (28%) or poor (5%), while nearly half of caregivers (46%) stated their
health troubles were standing in the way of assuming an expanded caregiving role. Forty-eight
percent stated their current health status was worse at the time of assessment than it had been
five years earlier. One in five caregivers (20%) had at least three medical exams in the last six
months.
Mental Health
PD caregivers experienced high levels of depression as illustrated by an average score of
19.88 on the CES-D3. In fact, 60% of this group scored 16 or higher on the CES-D questionnaire
(26% of PD caregivers self-reported depression was a current health problem). Among PD
caregivers, women scored significantly higher than men (t = -2.72, p< .01). Interestingly,
depression scores did not differ significantly by ethnicity, but did differ by type of relationship
between the caregiver and care recipient, albeit not significantly. Mothers and daughters of care
recipients scored the highest of all relationship groups on the CES-D (34.5 and 22.0,
respectively).
PD caregivers were significantly more likely to demonstrate higher depression scores if
their care recipients needed supervision with performing personal care tasks compared with PD 3 Score of 16 or higher on the CES-D demonstrates evidence of clinically significant depressive symptoms.
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caregivers reporting other functional needs. Additionally, PD caregivers who reported their
loved ones were either forgetting what day it was or were being argumentative or irritable, were
significantly more likely to score high on the CES-D respectively than PD caregivers whose care
recipient did not report these behaviors.
PD Caregiver Strain
More than one-third (38%) of PD caregivers reported the informal help and social
support they were receiving was far less than they needed. When asked how burdened they felt
in caring for their relatives, 28% of PD caregivers reported feeling “quite a bit” burdened while
16% reported feeling “extremely” burdened. Another 31% of PD caregivers reported feeling
“moderately” burdened.
Perception of role
Generally, PD caregivers reported feeling confident in their caregiving role, as
demonstrated by an average competency score of 21.4 out of a possible 27. A relatively small
percent of caregivers responded “not at all” when asked if they know where and how to request
help from others (12%). A majority of caregivers felt that they “somewhat” or “very much”
received the emotional support they needed (81%) and were able to develop ways to manage the
stresses of caregiving (83%).
Identified PD Caregiver Problems at Assessment
CRC Family Consultants reported the most common problems for PD caregivers at
assessment were the need for respite (85%), emotional support (83%), and behavior management
(32%). Figure 5 presents the current problems of PD caregivers upon completion of an
assessment.
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Figure 4. Identified PD Caregiver Problems at Assessment
Source: CRC Uniform Assessment Database (N = 324)
0 20 40 60 80
RespiteEmotional support
Behavior managementLegal information
Financial informationOther difficultyPlacement helpPhysical healthMental health
Marital/familySubstance abuse
% Yes 100
The most commonly planned actions by CRC staff to address caregiver needs following
the assessment were: family consultation (87%); follow up information & referral (73%); in-
home respite (70%); and support groups (48%).
Figure 5. Services Planned for PD Caregivers
0 25 50 75 100
Family consultationFollow-up information & referral
Respite: In-homeSupport group
Respite: Adult Day CareIndividual counseling
Legal/financial consultationCaregiver retreat
Education & trainingTransportation (respite & general)
% Planned For*
Source: CRC Uniform Assessment Database (N = 324) * “Percent Planned For” includes services provided by CRC staff, requested by CRC staff but unable to provide due to a waitlist, and referred to external service providers.
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CONCLUSION
The purpose of this report was to provide a “snapshot” profile of individuals caring for
loved ones with Parkinson’s Disease, one of the many debilitating brain impairments faced by
caregivers and care recipients in the CRC system. During 1999, the typical PD caregiver served
by the CRCs was a 64 year-old white female caring for her husband 14 hours a day for more than
three years. By contrast, the typical PD care recipient in the CRC system during this time was a
76 year-old white male living with the disease for nearly 8 years with an average of ten
functional problems, in addition to difficulty remembering recent events and appearing sad or
depressed.
As reported, high scores on the Center for Epidemiological Studies Depression Scale
(CES-D) indicate that many PD caregivers are at risk for clinical depression. Additionally, the
physical health of PD caregivers profiled in this report is of concern, as nearly half indicated
their health was worse than it had been five years before their CRC assessment and that health
troubles stood in the way of assuming a greater caregiving role. Overall, PD caregivers reported
increased depression, arthritis, asthma, diabetes, heart trouble, and high blood pressure,
compared to other caregivers. These findings indicate the level of care required by the “typical
PD care recipient” over the course of many years can lead to fatigue, frustration, and mental or
physical health problems for caregivers.
This information together with PD caregivers need for respite, emotional support, and
behavior management provides new opportunities for the CRC system to craft specialized
interventions for this caregiver population. In general, creative respite care options must be
explored given overwhelming community demand, while referrals for support groups and/or
individual counseling should be increased to address emotional support. Finally, family
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consultants should regularly refer PD caregivers to psychosocial groups, which provide behavior
management skills education and training, if warranted. Recognizing the tremendous strengths
of this caregiving group, as well as their needs, is essential for promoting health, well-being, and
empowerment among PD caregivers.
18
REFERENCES American Parkinson’s Disease Association, Personal Communication October 10, 2000. Figure
derived from an incidence of 20 cases/100,000 and an estimated population of 274,634,000 from U.S. Census Bureau (1999). Statistical Abstract of the United States: 1999. [Note: Projections for the year 2000.]
Caregiver Resource Center System (2001). Statement of Preferred Public Policies. San
Francisco, CA: Family Caregiver Alliance. February 22, 2001. Family Caregiver Alliance (2000). California’s Caregiver Resource System Annual Report
Fiscal Year 1998-99 to the California Department of Mental Health. Contract No. 98-78001, March 2000.
Family Caregiver Alliance (2000). Fact Sheet: Parkinson’s Disease. Revised August 2000. San
Francisco, CA: Family Caregiver Alliance. Feinberg, L.F., Whitlatch, C., Tucke, S. (2000). Making Hard Choices: Respecting Both Voices.
Final Report to the Robert Wood Johnson Foundation. San Francisco, CA: Family Caregiver Alliance.
Jahanshani, Marjan and C. David Marsden. (2000). Parkinson’s Disease: A Self-Help Guide.
New York City, NY: Demos Medical Publishing, Inc. National Institute of Neurological Disorders and Stroke (2000), Parkinson’s Disease Hope
Through Research, Bethesda, MD.
19
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APPENDIX A: POPULATION AND COUNTIES SERVED BY THE 11 CALIFORNIA CAREGIVER RESOURCE CENTERS
CRC Population of All Counties Combined
Counties Served
Family Caregiver Alliance 5,806,325 Alameda, Contra Costa, Marin, San Francisco, &
Santa Clara
Redwood 1,276,034 Del Norte, Humboldt, Lake, Mendocino, Napa, Solano, & Sonoma
Los Angeles 9,519,338 Los Angeles Inland 3,285,619 Inyo, Mono, Riverside, & San Bernardino
Del Oro 2,690,858 Alpine, Amador, Calaveras, Colusa, El Dorado,
Nevada, Placer, Sacramento, San Joaquin, Sierra, Sutter, Yolo, & Yuba
Southern 2,956,194 Imperial & San Diego Coast 1,399,225 San Luis Obispo, Santa Barbara, & Ventura
Mountain 570,343 Butte, Glenn, Lassen, Modoc, Plumas, Shasta, Siskiyou, Tehama, & Trinity
Valley 2,810,825 Fresno, Kern, Kings, Madera, Mariposa, Merced, Stanslaus, Tulare, &Tuolumne
Del Mar 710,598 Monterey, San Benito, & Santa Cruz Orange 2,846,289 Orange
Data source: California Department of Finance, Summary File 1: Census 2000.