What can friends and family of a person with Parkinson's do?
- Stay educated about the person's condition and abilities and adapt accordingly.
- Support environment and lifestyle changes that often need to be made by a person with Parkinson's disease.
- Encourage medical consultation with a physician.
- Request a referral for occupational therapy from a family physician to promote maximal capabilities in self-care, household tasks, and valued life activities.
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. 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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