Exploring the evidence base for how people with dementia and their informal carers manage their medication in the community: a mixed studies review

Aston, Lydia; Hilton, Andrea; Moutela, Tiago; Shaw, Rachel; Maidment, Ian

doi:10.1186/s12877-017-0638-6

Cited by 59 publications

(86 citation statements)

References 34 publications

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“…Third, most of the included studies that utilised qualitative approaches did not sufficiently address researcher bias. For example, triangulation with data (e.g., using caregivers' daily diary) and member checking may help to decrease researcher bias (Aston, Hilton, Moutela, Shaw, & Maidment, ). Fourth, in this review, the first author independently interpreted the data.…”

Section: Discussionmentioning

confidence: 99%

Exploring the challenges of medical/nursing tasks in home care experienced by caregivers of older adults with dementia: An integrative review

Lee¹,

Ryoo

Campbell

et al. 2019

Journal of Clinical Nursing

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Aims To examine prevalence, types, challenges and the impact of medical/nursing tasks (MNT) on caregivers of older adults with dementia. Background Medical/nursing tasks have been perceived as a professional healthcare role; however, research shows that many caregivers of older adults with dementia perform those tasks in the home, such as giving injections, tube feedings or operation of medical equipment. Little is known about the caregivers’ challenges in engaging in these MNT. Design Integrative review. Methods Ovid MEDLINE, CINAHL, PsycINFO and Web of Science databases were searched to explore MNT among caregivers of older adults with dementia who lived in a community setting. Four quantitative and nine qualitative studies published between 1980–2018 were included. Overall, process of the review was guided by PRISMA. Results About 67% of U.S. caregivers of older adults with dementia performed MNT, including managing multiple medications, wound care and nutritional management. Care recipients' cognitive impairment complicated the provision of those tasks due to their limited cognitive functioning, behavioural changes, comorbidities and complex medication regimen. Insufficient information and training from healthcare professionals as well as caregivers’ age and their own health problems made performance of those tasks even more challenging. As a result, caregivers frequently suffered from emotional distress such as worrying, anxiety and sleep disturbance. Conclusions Medical/nursing tasks have become one of the daily tasks of caregivers of older adults with dementia within the home. However, the tasks are difficult and complicated, and inadequate support from healthcare professionals may compromise the caregivers’ well‐being. Relevance to clinical practice Healthcare professionals should provide education and should be aware of caregivers’ needs related to MNT. Structured‐medical information, skill‐based instructions and hands‐on training may be beneficial to decrease the caregivers’ distress from MNT.

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Section: Discussionmentioning

confidence: 99%

Exploring the challenges of medical/nursing tasks in home care experienced by caregivers of older adults with dementia: An integrative review

Lee¹,

Ryoo

Campbell

et al. 2019

Journal of Clinical Nursing

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“… Caregivers of people with Alzheimer's or other dementias were twice as likely as caregivers of individuals without dementia (22% compared with 11%) to report that completing medical/nursing‐related tasks (for example, injections, tube feedings and catheter/colostomy care) was difficult 331 About half of caregivers (51%) of people with Alzheimer's or another dementia report having no experience performing medical/nursing‐related tasks, 331 and they often lack the information or resources necessary to manage complex medication regimens 369‐372 According to the 2014 Alzheimer's Association poll of caregivers, respondents often believed they had no choice in taking on the role of caregiver A13 …”

Section: Caregivingmentioning

confidence: 99%

2020 Alzheimer's disease facts and figures

2020

Alzheimer's & Dementia

2,033

653

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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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“…PLWDs might view caregivers' involvement as a threat to their own autonomy and competence, whereas caregivers may feel overwhelmed. Additionally, diabetes complications such as severe hypoglycemia are more frequent among PLWDs, partly due to their lower capacity for recognizing and responding to symptoms . Family members caring for a PLWD with diabetes also perceive inadequate support from healthcare providers .…”

Section: Discussionmentioning

confidence: 99%

“…Similarly, strategies to manage risks and conditions that co‐occur with osteoporosis might improve caregiver well‐being. Healthcare providers may not always recognize the particular challenges faced by caregivers managing dementia with medical comorbidities . Consequently, integrative care models that enlist caregivers and PLWDs as active partners offer considerable promise.…”

Section: Discussionmentioning

confidence: 99%

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Medical Comorbidities of Dementia: Links to Caregivers' Emotional Difficulties and Gains

Polenick

Min

Kales

2019

J American Geriatrics Society

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OBJECTIVES To evaluate how eight major medical comorbidities of dementia (arthritis, cancer, diabetes, heart disease, hypertension, lung disease, osteoporosis, and stroke) are associated with caregivers' perceptions of emotional caregiving difficulties and caregiving gains (ie, benefits or rewards from the care role). DESIGN Nationally representative cross‐sectional surveys of community‐dwelling persons living with dementia (PLWDs) and their co‐resident family caregivers in the United States. SETTING The 2011 National Health and Aging Trends Study and National Study of Caregiving. PARTICIPANTS Total of 356 co‐resident family caregivers of community‐dwelling PLWDs. MEASUREMENTS Caregivers' sociodemographic and health characteristics, caregiving stressors, emotional caregiving difficulties, caregiving gains, and chronic health conditions of PLWDs. RESULTS Caregivers most commonly cared for a PLWD with arthritis (65.5%), followed by hypertension (64.9%), diabetes (30.1%), stroke (28.8%), osteoporosis (27.1%), heart disease (23.3%), cancer (21.5%), and lung disease (17.2%). Logistic regressions revealed that caregivers were 2.63 and 2.32 times more likely to report higher than median emotional caregiving difficulties when PLWDs had diagnoses of diabetes and osteoporosis, respectively, controlling for caregiver sex, relationship to the PLWD (spouse vs non‐spouse), educational attainment, self‐rated health, and assistance with activities of daily living and medical care activities. Caregivers were also 2.10 times more likely to report lower than median caregiving gains when PLWDs had a diagnosis of osteoporosis. CONCLUSION Comorbid health conditions among PLWDs have distinct implications for caregiving outcomes. Clinical care and interventions to improve the well‐being of both care dyad members should support caregivers in managing medical comorbidities of dementia. J Am Geriatr Soc 68:609–613, 2020

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Exploring the evidence base for how people with dementia and their informal carers manage their medication in the community: a mixed studies review

Cited by 59 publications

References 34 publications

Exploring the challenges of medical/nursing tasks in home care experienced by caregivers of older adults with dementia: An integrative review

Exploring the challenges of medical/nursing tasks in home care experienced by caregivers of older adults with dementia: An integrative review

2020 Alzheimer's disease facts and figures

Medical Comorbidities of Dementia: Links to Caregivers' Emotional Difficulties and Gains

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