The role and profile of the informal carer in meeting the needs of people with advancing Parkinson's disease

Abstract

The care needs of PwP are considerable. To reduce carer strain and improve quality of life, carers' needs must be considered to enable them to carry on with their vital role.

Caregiver Burden in Late-Stage Parkinsonism and Its Associations

“…Only half received other informal or professional assistance for the patient's care. The percentage of caregivers receiving formal care assistance from professional services (49.2% overall, 42.7% in the UK) was higher than in a recent cohort of patients with advancing PD and their caregivers in the UK 34,35 (26.16%), which might be attributed to the separate assessment of formal help with personal care and domestic care in the other study 34 . Moreover, caregiving hours were lower in the present study (6.7 ± 6.6 hours per day, 8.2 ±7.1 in the UK) than in their study (median 16) 34 , which may be also attributed to discrepancies of definition (for example the study of Hand et al 34 with person-centered care in these northern European countries 36,37 .…”

Long-Term Partnerships in Lewy Body Dementias

“…Care provision helps the person with the condition to reach the highest possible functioning in their daily life [49]. Often, the care partner of a person with PD supports with personal, psychological and medical care, assisting with mental and physical exercising, maintaining good nutrition, arranging living conditions and helping with housework [32,51]. Care partners also coordinate, plan and manage care and look for various interventions and treatments that could potentially alleviate the symptoms of the care recipients [49,52].…”

“…Notably, in addition to providing care, a proportion of care partners may be in part-time or full-time employment [53], which raises complex issues around managing their work and care commitments and may diminish their time and energy to provide care. In addition, care partners may also be older adults themselves and have physical and mental health issues which may limit their capabilities to provide care [51]. As a consequence, care partners, particularly within dementia, may have increased negative feelings, depression, diminished well-being, and neglect their own health [54].…”

“…The progressive and complex nature of the motor, psychiatric and cognitive symptoms of LBD [73] can reduce one's ability to carry out everyday activities and take care of oneself, thus increasing the need of a care partner. Care partners have a substantial role to play in the lives of people with PDD or DLB as they support and assist with activities of daily living, personal care, medication, feeding, housework, attending specialists' appointments, maintenance of the person's quality of life and independence, and being there as a partner and friend [51,60,74,75]. Commonly, a care partner of a person with PD is a female spouse, aged around 70 years, living with her partner, having provided care for an average of 5 years and currently providing up to 16 hours of care per day [33,[76][77][78][79].…”

“…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.…”