Parkinson’s Disease Caregiving - Family Caregiver AlliancePARKINSON’S DISEASE FACTS What is...

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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

    i

  • 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

    ii

  • 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.

    iii

  • 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.

    iv

  • 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%).

    v

  • 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.

    1

  • Similarities and differences between PD caregivers and other caregivers served by the CRC

    system are also reviewed throughout the report.

    2

  • 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.

    3

  • 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).

    4

  • 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

    5

  • 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%

  • 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).

    7

  • 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

    8

  • 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

    9

  • 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

    10

  • 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%).

    11

  • 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”

    12

  • 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.

    13

  • 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.

    14

  • 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.

    15

  • 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.

    16

  • 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

    17

  • 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.