Factors Influencing Quality of Life in Caregivers of People with Parkinson's Disease and Implications for Clinical Guidelines

Abstract

The quality of life (QoL) of informal caregivers can be adversely affected by a number of factors. This issue, however, has not been well explored for carers of people with Parkinson's (PwP), with research largely restricted to the assessment of caregiver burden and caregiver strain. This study aims to determine the main influences on carer QoL in this population and consider results in the context of current clinical guidelines for the management of Parkinson's disease (PD). Carers completed the newly validated PDQ-Carer, and PwP completed the PDQ-39. The sample comprised 238 carers (mean age 68.20 years) and 238 PwP (mean age 71.64). Results suggest multiple influences on caregiver QoL. These include carer age, gender, health status, and duration of the caregiving role. PwP levels of mobility and cognitive impairment are also significant influences on carer QoL. Not only should practitioners and service providers be particularly aware of the heightened impact of PD on carers over time and as PwP symptoms deteriorate, but this should also be reflected in clinical guidelines for the management of PD.

Predictors of the psychosocial impact of being a carer of people living with Parkinson's disease: A systematic review

“…SF-36) and disease-specific measures (e.g. PDQ-39) and a relationship was revealed for three studies [21,26,43]. Martinez-Martin et al [25] did not find any relationships; however, PwP QoL was assessed by the carer using proxy measures.…”

“…Details of the carer role, level of involvement or caring duties were rarely given. Only four studies [21][22][23][24] reported…”

“…PwP dependency in activities of daily living (ADL) [6,25], cognitive impairment [6,25], carer age [21,25] and years of caregiving [21,26] were also identified as predictors but this relationship was found only once across each of the two studies.…”

Anticipatory Grief among Close Relatives of Patients with Parkinson’s Disease

“…Surprisingly many respondents among the PD relatives seemed to be adjusted and well-functioning in daily life, have resources left, be able to move on with their lives, and plan for the future. Also, lack of interest with daily news and activities was sparsely reported, which may tell us that sacrifice and other feelings of burden around the disease concomitants either were withheld or did not come through as in other studies (7,12,26). Possibly this says that many of responders in our study had good insight, were accommodated to the situation, found help in the support groups, and after all had the energy and mental prerequisites to follow their relatives' further struggles.…”

More than movement: the importance of the evolution of mild cognitive impairment in Parkinson's disease

“…For a long time, PD has been primarily considered as a motor disorder, but in the last decades, several studies have highlighted the importance of cognitive symptoms and their impact on the quality of life of the patients and their caregivers 1 2. That is why the identification of predictors of evolution to dementia in PD (PDD) must be a key research priority.…”