Effects on caregivers | Reference (study type; sample size) |
Frustration and sadness as predominant emotions regarding caregiving | Boersma 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 burden | Fox 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 activities | Tessitore 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 Clinic | Bruno et al 64: caregivers’ report |
ZBI, Zarit Burden Inventory.