**6.2 Quality of life**

*Geriatric Medicine and Gerontology*

PDD and DLB.

fatigue [79].

with LBD is crucial.

**6.1 Physical and mental health**

Studies have evaluated which aspects of PD (in the absence of cognitive impairment) have the highest impact on care partners. Findings suggest that both motor and non-motor symptoms of PD affect care partners' well-being, quality of life and burden but non-motor domains, particularly psychiatric manifestations such as apathy, psychosis, depression and cognitive impairment, tend to have a stronger effect [70, 72, 78, 81–85]. Similarly, the notion that caring for someone with mental illness is emotionally harder, more complex and taxing, as opposed to caring for someone with a physical illness, has been previously posited. This may be due to the changeable, unstable and erratic symptom presentation in mental health conditions, which disrupts 'the coherence of everyday life' ([86], p. 7). This is in line with literature on care partners of people with dementia [52, 87], PD [39, 70] and DLB [74], confirming the complexity of non-motor symptoms in

Providing care to a person with PD can be emotionally draining, physically challenging and mentally exhausting for care partners [75, 88]. The impact of PD on care partners is multifaceted, including social, financial, physical, emotional, mental and cognitive aspects. Socially, care partners of people with PD may not be able to go out as much as before, struggle to get away on holidays and have fewer social interactions with their friends, family and neighbours [74, 89–91]. In addition, due to care provision many care partners may be unable to do their usual daily tasks, activities and hobbies, and may receive insufficient social support from friends and family. Having hobbies, being socially active and receiving social support are important because they could protect against worsening of health and well-being [66, 70, 92]. Physically, care partners may experience deterioration in health [90], health-related quality of life [5, 93, 94] and greater

In terms of mental–emotional aspects, care partners may encounter negative feelings, such as frustration, sadness, anger, resentment, guilt, worry [75, 95], and feel overwhelmed, stressed, strained and burdened [72, 74, 77, 78, 83, 84, 92, 96–98]. Care provision may significantly increase anxiety and depression [89, 93, 95] and lower care partners' mental health [93]. As a consequence, PD care partners' life satisfaction may reduce [95]. Furthermore, in non-PD care partners, the rates of mortality [98], cognitive impairment [99] and relationship dissatisfaction [100] may increase. All of these factors can be escalated with the progression of cognitive impairment in PD [101], which suggests that focusing on the care partners of people

Several studies have found that care provision within PD can worsen mental health and result in distress in care partners [89, 93, 95] compared to the general population. Nearly 50% of care partners of people with PD may experience clinically significant anxiety and depression [72]. Among PD care partners, over a third experienced a deterioration of their health due to care provision [85]. Lack of sleep, fatigue, high blood pressure, muscle strain, headaches and gastrointestinal problems were also common in this group [77] and likely a direct result of providing care. Poor mental health in care partners is directly linked to duration of care provision in years and proportion of hours devoted to caring each day [79]. Moreover, lower levels of mental health are also predicted by care recipients' motor, psychiatric and cognitive symptoms, although drawing definite conclusions about what predicts mental health remains difficult due to the variability of the measures, inconsistent findings and lack of evidence [70]. Importantly, despite the care partners' own health needs, they felt they had to stay healthy as long as possible to be

**42**

Providing care to a person with PD can have a direct effect on care partners' well-being and quality of life. In the literature, quality of life has been synonymously used with other terms such as health, health status, perceived health, functional status, and health-related quality of life although these terms are independent of one another [102]. The concepts of quality of life are wide incorporating economic, environmental, cultural, social, spiritual and personal aspects [103, 104], whereas health-related quality of life specifically focuses on individual's physical, mental and social aspects and the perceptions of their global health [103, 104]. Health-related quality of life has been found to be lower among care partners of people with PD compared to general population [92] and decreases with the emergence and development of cognitive impairment in PD [5, 105, 106].

Quality of life is associated with several factors. Lower quality of life in care partners was predicted by the care recipients' disease-related factors (i.e. motor, cognitive and neuropsychiatric symptom severity, poorer quality of life, higher need for care, greater dependency in activities of daily living), personal aspects (i.e. higher age, depression) and care-related variables (i.e. longer duration of care provision in years and hours per day) [51, 70, 105, 107]. Well-being of care partners is important because lower strain and 'caregiving load' reduces the risk of institutionalising persons with PD [108], which has long-term implications for the future.
