Resilience in People with Lewy Body Disorders and Their Care Partners: Association with Mental Health, Relationship Satisfaction, and Care Burden

Abstract

The emergence of cognitive impairment and dementia in people with Lewy body spectrum disorders (LBS) significantly impacts the quality of life of the individual and their care partner. Coping well with the condition may depend, in part, on the degree of psychological resilience or capacity to ‘bounce back’ from adversity. We explored resilience in people with Parkinson’s disease mild cognitive disorder or dementia, or dementia with Lewy bodies, and their care partners, and its relation to outcomes related to their mental well-being and quality of life. This exploratory, cross-sectional study recruited 76 participant-dyads. Resilience, quality of life, depression, anxiety, and relationship satisfaction were evaluated in both members of the dyad. In care partners, care burden and stress were also assessed. Over 70% of both care partners and recipients reported high levels of resilience. Lower resilience in both members of the dyad was associated with higher anxiety and lower quality of life. Additionally, lower resilience in care partners was associated with lower well-being, relationship satisfaction, and higher burden and stress. Resilience in persons with LBS and their care partners is important to consider when assessing mental health, relationship, and care burden outcomes, acting as a focus of intervention to support positive outcomes.

Caregiver Burden in Movement Disorders and Neurodegenerative Diseases: Editorial

“…By using a cross-sectional monocentric exploratory study, Vatter et al investigated resilience in people with PD dementia and their caregivers [ 17 ]. Lower resilience was associated with higher anxiety and lower quality of life in patients with PD dementia.…”

A systematic review and psychometric evaluation of resilience measurement scales for people living with dementia and their carers

“…Two studies [ 42 , 66 ] each report on two different measures so data for each measure is presented separately in Table 2 , generating a total of 53 psychometric assessments. The majority of the studies focussed on carers ( n = 47), three studies focused on people living with dementia, and one study [ 45 ] focussed on the dyad (people with dementia and their carers). One study [ 48 ] sought to adapt and evaluate the psychometric properties of positive psychology measures (which included a resilience measure, the RS-14) for people living with dementia.…”

“…85% 9 n = 116) female; 95% ( n = 129) married; 89% ( n = 122) white British; mean age = 69.4 (SD = 7.62) England (English) Cross sectional design derived from a pilot feasibility study (Face to face interviews and self-completion) None specified Reliability not reported in this study sample Not hypothesis driven: The study reports a large negative correlation between carer resilience and the Zarit Burden scale ( r = -0.53, p < 0.001), and medium and large correlations between carer resilience and five dimensions derived from a factor analysis; social and psychological constraints ( r = -0.40, p < 0.001); personal strain ( r = -0.50, p < 0.001); interference with personal life ( r = -0.38, p < 0.001); concerns about the future (r = -0.34, p < 0.001) and guilt ( r = -0.31, p < 0.001) Vatter et al [ 44 ] (To explore and compare levels of mental health, care burden, and relationship satisfaction among caregiving spouses of people with mild cognitive impairment or dementia in Parkinson disease (PD-MCI or PDD) or dementia with Lewy bodies (DLB) N = 136 spouse/life partner caregivers (same participants as reported in Vatter et al, 2018) England (English) Cross sectional design derived from a pilot feasibility study (Face to face interviews and self-completion) None specified Reliability not reported in this study sample Not hypothesis driven: No differences were found for carer resilience across the three types of dementia Medium negative and large correlations between carer resilience and ZBI ( r = -0.47, p < 0.01); anxiety ( r = -0.59, p < 0.01); depression ( r = -0.54, p < 0.01); relatives stress ( r = -0.50, p < 0.01); relationship strain ( r = -0.33, p < 0.01); role resentment ( r = -0.42, p < 0.01); role anger (r = -0.32, p < 0.01). Positive correlations between carer resilience and mental health ( r = 0.59, p < 0.01); health related quality of life ( r = 0.35, p < 0.01); self-rated health ( r = 0.34, p < .01) Vatter and Leroi [ 45 ] (To explore resilience in people with Parkinson’s disease mild cognitive disorder or dementia, or dementia with Lewy bodies, and their care partners, and its relation to outcomes related to their mental well-being and quality of life) N = 76 dyads ( n = carers and n = 76 people with dementia) Of the participants w...…”

Burden and benefit—A mixed methods study of informal Amyotrophic Lateral Sclerosis caregivers in Ireland and the Netherlands

“…Psychosocial interventions should focus on enhancement of the positive aspects of caring which could reinforce caregivers' well-being, resilience and reduce the impact of stress and burden. [14][15][16][17] Positive aspects of caregiving for a family member with a progressive neurological disorder can affect adaptation to bereavement in terms of depression and grief. 18 The aim of this mixed methods, exploratory analysis was to explore both caregiver burden and self-described positive experiences of informal caregivers of people with ALS attending two multidisciplinary clinical centres in Dublin and Utrecht.…”

“…ALS is a progressive neurodegenerative disorder with death occurring approximately 3–5 years after symptom onset, 13 and it is particularly important to explore the positive as well as the negative aspects associated with caregiving to support caregiver wellbeing. Psychosocial interventions should focus on enhancement of the positive aspects of caring which could reinforce caregivers' well‐being, resilience and reduce the impact of stress and burden 14‐17 . Positive aspects of caregiving for a family member with a progressive neurological disorder can affect adaptation to bereavement in terms of depression and grief 18 …”