Influence of Positive Aspects of Dementia Caregiving on Caregivers’ Well-Being: A Systematic Review

Quinn, Catherine; Toms, Gillian

doi:10.1093/geront/gny168

Cited by 111 publications

(137 citation statements)

References 39 publications

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“…In this study, ''construction of meaning'' at the ''situational'' level is most appropriate as caregivers cope with specific stresses of caregiving in MUCs. They are similar to concepts of ''uplifts'' (Kinney & Stephens, 1989) ''inner growth,'' (Pearlin, Mullan, Semple, & Skaff, 1990) and ''meaning-focused coping strategies,'' (Folkman, 1997(Folkman, , 2008 and those generally embedded in positive aspects of caregiving (Carbonneau et al, 2010;Cherry et al, 2017;Grover et al, 2017;Quinn & Toms, 2018;Totman, Pistrang, Smith, Hennessey, & Martin, 2015;Yu et al, 2018;Zarit, 2012). MUC caregivers in this study constructed meaning mainly through making positive reappraisals of caregiving challenges as explained later.…”

Section: Discussion and Conclusion Discussionsupporting

confidence: 55%

Informal Caregiving in a Medically Underserved Community: Challenges, Construction of Meaning, and the Caregiver–Recipient Dyad

et al. 2019

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Little is known about informal caregivers' challenges in medically underserved communities. This qualitative study explores their perceptions/experiences of caregiving in a medically underserved community in Midwest United States. Two focus groups (n ¼ 12) were conducted and themes were extracted and analyzed. Theme 1 included perceived barriers/unmet needs; most prevalent of which were lack of informational resources and support groups. A second unsolicited and unanticipated theme highlighted how caregivers constructed meaning through reappraising challenges to create enriching experiences for themselves, reinforcing their evolving dyadic relationship with care-recipient. Challenging and enriching aspects of caregiving coexisted and were rooted in caregiver-care-recipient dyad. Caregivers used meaning-making as a coping strategy for challenges. Prior research corroborates caregivers' challenges and meaning-making; this study contributes by delineating how both become interrelated. Policy makers can (a) alleviate challenges by increasing informational resources and support groups and (b) provide training to optimize caregivers' meaning-making, thus enhancing their positive experiences.

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Section: Discussion and Conclusion Discussionsupporting

confidence: 55%

Informal Caregiving in a Medically Underserved Community: Challenges, Construction of Meaning, and the Caregiver–Recipient Dyad

et al. 2019

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“…In a national poll, however, 45% of caregivers of people with dementia indicated that providing help to someone with cognitive impairment was very rewarding 326 . Although caregivers report positive feelings about caregiving, such as family togetherness and the satisfaction of helping others, A13 , 351‐357 they also frequently report higher levels of stress.…”

Section: Caregivingmentioning

confidence: 99%

2020 Alzheimer's disease facts and figures

2020

Alzheimer's & Dementia

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This article describes the public health impact of Alzheimer's disease (AD), including incidence and prevalence, mortality and morbidity, use and costs of care, and the overall impact on caregivers and society. The Special Report discusses the future challenges of meeting care demands for the growing number of people living with Alzheimer's dementia in the United States with a particular emphasis on primary care. By mid‐century, the number of Americans age 65 and older with Alzheimer's dementia may grow to 13.8 million. This represents a steep increase from the estimated 5.8 million Americans age 65 and older who have Alzheimer's dementia today. Official death certificates recorded 122,019 deaths from AD in 2018, the latest year for which data are available, making Alzheimer's the sixth leading cause of death in the United States and the fifth leading cause of death among Americans age 65 and older. Between 2000 and 2018, deaths resulting from stroke, HIV and heart disease decreased, whereas reported deaths from Alzheimer's increased 146.2%. In 2019, more than 16 million family members and other unpaid caregivers provided an estimated 18.6 billion hours of care to people with Alzheimer's or other dementias. This care is valued at nearly $244 billion, but its costs extend to family caregivers’ increased risk for emotional distress and negative mental and physical health outcomes. Average per‐person Medicare payments for services to beneficiaries age 65 and older with AD or other dementias are more than three times as great as payments for beneficiaries without these conditions, and Medicaid payments are more than 23 times as great. Total payments in 2020 for health care, long‐term care and hospice services for people age 65 and older with dementia are estimated to be $305 billion. As the population of Americans living with Alzheimer's dementia increases, the burden of caring for that population also increases. These challenges are exacerbated by a shortage of dementia care specialists, which places an increasing burden on primary care physicians (PCPs) to provide care for people living with dementia. Many PCPs feel underprepared and inadequately trained to handle dementia care responsibilities effectively. This report includes recommendations for maximizing quality care in the face of the shortage of specialists and training challenges in primary care.

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“…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].…”

Section: Resultsmentioning

confidence: 99%

“…Engagement in social activities and self-help groups have previously been found to buffer the negative impact of caregiving [30,31]. Possible approaches for reducing high levels of psychological distress and caregiver burden could include providing peer and professional psychological support [32], enabling caregivers to gain more positive experiences while caregiving and enhancing their sense of coherence [11,29], and helping caregivers to stay engaged in the workforce [15]. In particular, improving caregivers' access to peer support, in conjunction with providing internet-based intervention programs, could form an essential part of a comprehensive approach targeting informal care resources [32].…”

Section: Resultsmentioning

confidence: 99%

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

Kontrimienė¹,

Sauserienė²,

Blaževičienė³

et al. 2020

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Background In many communities around the world, informal caregivers of older adults with mental disorders (such as dementia) represent an essential, yet often underappreciated, source of long-term care. The present study aimed to determine the personal experiences of such caregivers, which could be instrumental for developing means of improving the quality of care for both care receivers and their informal caregivers.Methods Five semi-structured focus-group discussions were held. The participants (n = 31) were all informal caregivers of older adults with mental disorders. The focus-group discussions were audio-recorded and transcribed verbatim. An inductive approach was used, and thematic data analysis was applied.Results Four thematic categories were identified: learning caregiving through personal experience; implications of caregiving on social wellbeing; caregivers’ contradictory emotions regarding care delivery; and addressing challenges regarding care provision.Conclusions This study revealed, among the informal caregivers, a variety of experiences, contradicting feelings, and problem-solving strategies relating to the care of older adults with mental disorders. Becoming an effective caregiver involves professional and psychological development, but also requires a relevant educational background, a positive attitude, and a supportive environment. Caregiving largely impacts the emotional, physical, and social wellbeing of the person; thus, comprehensive approaches are needed to prevent burnout and associated social disadvantages.

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Influence of Positive Aspects of Dementia Caregiving on Caregivers’ Well-Being: A Systematic Review

Cited by 111 publications

References 39 publications

Informal Caregiving in a Medically Underserved Community: Challenges, Construction of Meaning, and the Caregiver–Recipient Dyad

Informal Caregiving in a Medically Underserved Community: Challenges, Construction of Meaning, and the Caregiver–Recipient Dyad

2020 Alzheimer's disease facts and figures

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

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