Table 2

Psychosocial effects of Parkinson’s disease (PD) on caregivers61–64

Effects on caregiversReference (study type; sample size)
Frustration and sadness as predominant emotions regarding caregivingBoersma et al 61: qualitative (interview and focus group)
Taking on new roles and responsibilities, such as becoming the primary decision maker
Assuming a greater responsibility for household tasks, acting as a chaperone, and spending less time doing and planning recreational activities
Difficulties in communicating with the person with PD
Impact of PD’s clinical features on caregiver’s sleep, physical caregiving and social embarrassment
Concerns for physical safety when a person with PD experiences psychosis
Concerns related to finances, housing/living situation and taking care of their spouses in advanced stages
Guilt in acknowledging significant financial, physical and emotional caregiving burdenFox et al 62: qualitative (semistructured interview)
Social isolation as the person with PD becomes more dependant and requires full-time care
Bereavement due to the loss of the person with PD or loss of their loved one’s personality
Difficulty in making tough decisions about the care of their loved one
Feelings of guilt and despair when it is no longer possible or preferential to care for the person with PD at home
Change in capability to perform family duties and leisure activitiesTessitore et al 63: cross sectional
Change in work
65% of caregivers experienced physical aggression and 27% experienced sexual aggression in their first visit to the Movement Disorders Palliative Care ClinicBruno et al 64: caregivers’ report
  • ZBI, Zarit Burden Inventory.