How Is End-of-Life Care With and Without Dementia Associated With Informal Caregivers’ Outcomes?

Abstract

Background: Palliative care for older people with life-limiting diseases often involves informal caregivers, but the palliative care literature seldom focuses on the negative and positive aspects of informal caregiving. Objective: To assess the association of proximity to end of life (EOL) and dementia caregiving with informal caregivers’ burden of care and positive experiences and explain differences in outcomes. Design: Data on 1267 informal caregivers of community-dwelling older people were selected from a nationally representative cross-sectional survey and analyzed using analysis of variance and multivariable regression analyses. Measurements: The Self-Perceived Pressure from Informal Care Scale and the Positive Experiences Scale were administered to assess caregiver burden and positive experiences with providing care. Results: Dementia care, both at EOL and not at EOL, was associated with the most caregiver burden relative to regular care. Dementia care not at EOL was associated with the fewest positive experiences, and EOL care not in dementia with the most positive experiences. Only the differences in burden of care could be explained by variables related to stressors based on Pearlin stress-coping model. Conclusions: Informal caregivers of people with dementia are at risk not only of high caregiver burden but also of missing out on positive experiences associated with caregiving at EOL. Future research should examine how dementia-related factors reduce positive caregiving experiences, in order to make palliative care a positive reality for those providing informal care to community-dwelling persons with dementia.

Qualitative research of informal caregivers’ personal experiences caring for older adults with dementia in Lithuania

“…A recent study conducted in the Netherlands revealed that informal caregivers of people with dementia experience a higher caregiving burden than do regular-care caregivers [ 9 ]. Other studies have supported this, showing that informal caregiving for older adults with dementia has a negative effect on the caregivers themselves, such as by increasing loneliness, stress, and social isolation [ 10 , 11 ]; negatively impacting mental and physical health outcomes [ 12 – 14 ]; and impeding financial potential [ 15 ].…”

Qualitative research of informal caregivers’ personal experiences caring for older adults with mental disorders in Lithuania: A phenomenological approach

“…Although the focus-group participants reported contradictory and ambiguous feelings regarding their situations, many positive aspects related to care were revealed: love, possibility of returning the care one had received over his/her lifetime, perception of the importance of one's own role as a caregiver, personal growth and maturity, and a sense of competence. Such positive reflections have a beneficial effect on the well-being of informal caregivers, and interventions that enable caregivers to gain further positive experiences in their roles should be encouraged [9,29].…”

“…Other studies have supported this, showing that informal caregiving for older adults with mental disorders has a negative effect on the caregivers themselves, such as by increasing loneliness, stress, and social isolation [10,11]; negatively impacting mental and physical health outcomes [12][13][14]; and impeding financial potential [15]. Further, caregivers have been found to self-report lower levels of quality of life and health in general when compared to non-caregivers [1,9] and to have chronic physical conditions [16].…”

“…A recent study conducted in the Netherlands revealed that informal caregivers of people with dementia experience a higher caregiving burden than do regular-care caregivers [9]. Other studies have supported this, showing that informal caregiving for older adults with mental disorders has a negative effect on the caregivers themselves, such as by increasing loneliness, stress, and social isolation [10,11]; negatively impacting mental and physical health outcomes [12][13][14]; and impeding financial potential [15].…”

Development and evaluation of the Singapore Caregiver Quality of Life Scale - Dementia

“…As examples, caregivers of PWD may suffer the feeling of their loved ones becoming strangers to them or embarrassment related to their loved one’s behavior that arises from the condition [ 2 , 3 ]. Caregivers of PWD, compared to caregivers of patients with other illnesses, are at risk of higher caregiver burden [ 4 ]. Effective and ethical management of dementia should involve both the patient and caregiver [ 5 , 6 ].…”