Analysis of Transition of Patients with Parkinson’s Disease into Institutional Care: A Retrospective Pilot Study

Abstract

Parkinson’s disease (PD) is a neurodegenerative disease which gives a person a high risk of becoming care-dependent. During disease progression, the amount of care concerning activities of daily living can increase, possibly resulting in transition of the people with Parkinson’s disease (PwP) to a care facility. However, there is a lack of knowledge concerning the factors leading to institutionalization of PwP and the consequences for them and their informal caregivers. The aim of this cross-sectional retrospective study was to investigate reasons leading to the transition into an institutional care facility, the process of decision-making and its effects on PwP symptoms and caregiver burden. Participating PwP had to be institutionalized for at most one year after transition at study inclusion. Participants completed a range of semiquantitative questionnaires as well as the caregiving tasks questionnaire. Fourteen patient–caregiver pairs were included. PwP suffered from late-stage PD symptoms with high dependence on help, experiencing several hospitalizations before transition. Analyses revealed a significant decrease in caregiver burden and depressive symptoms of the caregivers after PwP institutionalization. Factors influencing the transition were, e.g., fear of PwP health issues and concerns about caregivers’ health. This study presents new insights into the process of institutionalization and its influence on caregiver burden, including aspects for discussions of physicians with PwP and their caregivers for counselling the decision to move to institutional care.

Caregiver Burden in Movement Disorders and Neurodegenerative Diseases: Editorial

“…Hence, with progressive burden, the caregiver suffers from depressive mood and reduced quality of life [ 7 ]. Finally, in the case of caregiver burnout, the informal caregiver cannot further support the patient, and this often leads to institutionalization of the patient [ 8 ]. Strategies for the relief of caregiver burden and the prevention of caregiver burnout are desperately needed.…”

“…Jensen et al published a retrospective semiquantitative pilot study on the transition of PD patients to institutional care [ 8 ]. This study analyzed the decision process, the symptoms of the PD patient, the burden of the caregiver, and also caregiver tasks.…”

Impact of Isolation During the COVID-19 Pandemic on the Patient Burden of Parkinson’s Disease: A PMD Alliance Survey

“…Non-motor symptoms of PD profoundly add to caregiver burden, adversely affect caregivers’ mental health, 10 , 11 , 30 , 31 and are associated with a reduced CP satisfaction from their relationship with the PwP. 32 The increase in delusions and hallucinations reported by PwP in this survey are particularly worrisome, since, in addition to frequent hospitalizations and falls, 33 it is these symptoms that have been found to be the main reason for placement in a long-term care facility. 34 The reduced social support from outside of the household during the pandemic may contribute substantially to caregiver burnout and concerns about their own wellbeing, in addition to affecting PwPs care.…”

“…All these factors have also been reported to contribute to the transition of the PwP to an institutional long-term care facility. 33 It is therefore crucial that routine clinical follow-up in PD includes a thorough assessment of non-motor symptoms, particularly in PwP experiencing social isolation which may predispose to non-motor symptom intensification.…”

Neuropsychiatric Symptoms in Parkinson’s Disease Patients Are Associated with Reduced Health-Related Quality of Life and Increased Caregiver Burden

“…As a result, mostly family members, and especially spouses undertake the care of the patient and become the informal caregiver. However, in several cases, additional professional caregivers or institutionalization of the patient are inevitable [ 2 , 3 ].…”