Objective: 1. To understand the ‘triggers’ to care home placement for a person with Parkinson’s disease (PD) from an informal caregivers’ perspective

2. To understand the role of caregiver strain in influencing the decision for care home placement

Background: Many people with PD (PwP) will require care from either informal caregivers or formal carers at home as their condition progresses. At some stage though it may not be possible for the PwP to remain in their own home and a move to a care home (either residential or nursing), is required. There are scant data on the predictors of care home placement with most papers focusing on the particular symptoms displayed by the PwP. Only two papers have been found demonstrating that caregiver strain can result in care home placement for PwP and conclusions from these studies were drawn from very small samples.

Methods: Using a longitudinal mixed methods approach all PwP and their informal caregivers, known to the Northumbria PD service, with Hoehn and Yahr >3, PDD, PSP, MSA or CBD were invited to participate in the Care Needs Study. A selection of informal caregivers were invited to take part in in-depth semi-structured interviews about their experiences when the person they cared for entered a care home permanently. Two researchers thematically analysed the data.

Results: From 1^st January 2015 – 31^st December 2016, 22 PwP went into care, of those 18 had an informal caregiver. In-depth interviews were conducted with 10 caregivers (6 wives, 1 husband, 1 sister, 1 son and 1 daughter).  Three areas were explored and emerging themes included;

– Pre-placement: caregiver quality of sleep, PwP  behaviour change, falls and worry for the safety of the PwP, expectation to care, formal care support, carer health and relationship damage

– Triggers: all permanent care home placements were due to caregiver inability to cope and followed a hospital admission or respite placement

– Post -placement: caregiver guilt but reduced burden and improved quality of relationship

Conclusions: Ultimately all PwP involved in the study went into a care home as their caregiver could no longer cope.  We need to find better ways to support caregivers caring for PwP to remain at home, but also facilitate care home placement when required by telling caregivers “It’s not disgraceful to say you can’t cope.”

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MDS Abstracts - https://www.mdsabstracts.org/abstract/its-not-disgraceful-to-say-you-cant-cope-understanding-the-caregivers-perspective-in-care-home-placement-for-people-with-parkinsons/