Objective: To understand the roles and involvement of informal carers of people with moderate to late stage Parkinson’s disease (PD).

Background: Many people with PD (PwP) will require care from either informal carers (e.g. wife/husband/family) or formal carers (paid carers) at home as their condition progresses. There have been numerous studies looking at the impact that PD has on informal carers but very few studies provide details on the carers’ role, duties undertaken and level of involvement in terms of daily caregiving hours and total duration of caregiving, particularly as the disease progresses. There is also little know about the amount of formal (paid) care that PwP receive.

Methods: All PwP, known to the Northumbria PD Service with Hoehn and Yahr (H&Y) stage 3 or above, living in their own home were invited to participate in the Care Needs Study. We identified both formal and informal care requirements. Any identified informal carers were also invited to participate with data collected on the nature and extent of their caregiving role.

Results: Data were available for 115 matched carers, of whom 63.5% were female. The majority of carers were the spouse of the PwP (83.5%), 12.2% were an offspring/daughter in law, 2.6% were a sister and 1.7% were a friend. The mean carer age was 70.6 years (range 35 to 91 years), 85.2% of carers lived with the person they cared for. The median time spent as a carer was 5 years (range 1 to 43). The median number of hours spent caring per day was 16 (range 1 to 24). Over 80% of carers provided help in housework tasks and companionship activities. However assistance with personal care, feeding and during sleep was less common. There was a weak, but significant, positive correlation between H&Y stage and length of time spent caring (r = 0.217, p = 0.031). However there was a strong association between H&Y stage and whether the carer was a spouse/sibling or offspring/daughter in law, with 91.8% patients of H&Y stage III cared for by a spouse or sister, compared to only 50.0% of those in stage V (p = 0.004). Formal care was less common, with only 21.7% having help with personal care and 12.2% with domestic care. Of those who had help with personal care 84.0% were H&Y stage IV or V.

Conclusions: The number of years, and proportion of the day, spent by informal carers of PwP is very appreciable and largely unrecognised. The amount of formal care PwP received was surprisingly low.

« Back to 2016 International Congress

MDS Abstracts - https://www.mdsabstracts.org/abstract/the-changing-profile-of-informal-carers-for-people-with-parkinsons-with-disease-progression/