In Our Community, Dementia Speaks: Pilot of a person-centered training targeting African-American caregivers of persons-living with dementia (innovative practice)

Guest, M. Aaron; Smith, Macie P.

doi:10.1177/1471301219885784

Cited by 9 publications

(29 citation statements)

References 5 publications

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“…With an ageing population, in order that a sustainable trained workforce is developed for the future, dementia training needs to be expanded in medical curricula at both undergraduate and postgraduate levels. In addition, training for community leaders, religious leaders, and school children to educate for the future would help to improve awareness and address any stigma that currently exists with this disease, as has happened in UK and some LMICs (41)(42)(43)(44).…”

Section: Discussionmentioning

confidence: 99%

A Qualitative Study on Formal and Informal Carers' Perceptions of Dementia Care Provision and Management in Malaysia

Goodson

McLellan

Rosli

et al. 2021

Front. Public Health

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Background: The number of people living with dementia worldwide is increasing, particularly in low- and middle-income countries (LMICs) where little is known about existing post-diagnostic care and support. This study aimed to better understand healthcare provision for people living with dementia in Malaysia, and to identify priorities for providing timely, quality, and accessible care and support to all.Methods: This is a qualitative interview study on care providers and facilitators (health and community care professionals, paid carers, traditional medicine practitioners, faith healers, community leaders, non-governmental organisations). A topic guide, piloted in Malaysia and peer reviewed by all LMIC partners, elicited the understanding of dementia and dementia care and barriers and facilitators to care for people living with dementia and carers, and perceptions of key priorities for developing efficient, feasible, and sustainable dementia care pathways. Verbatim transcription of audio-recorded interviews was followed by iterative, thematic data analysis.Results: Twenty interviews were conducted (11 healthcare professionals, 4 traditional medicine practitioners, and 5 social support providers). The findings indicate that dementia care and support services exist in Malaysia, but that they are not fully utilised because of variations in infrastructure and facilities across the country. Despite a locally recognised pathway of care being available in an urban area, people with dementia still present to the healthcare system with advanced disease. The interviewees linked this to a public perception that symptoms of dementia, in particular, are normal sequelae of ageing. Earlier detection of dementia is commonly opportunistic when patients present to GPs, government clinic staff, and general physicians with other ailments. Dementia may only be identified by practitioners who have some specialist interest or expertise in it. Workforce factors that hindered early identification and management of dementia included lack of specialists, overburdened clinics, and limited knowledge of dementia and training in guideline use. Post-diagnostic social care was reported to be largely the domain of families, but additional community-based support was reported to be available in some areas. Raising awareness for both the public and medical professionals, prevention, and more support from the government are seen as key priorities to improve dementia management.Conclusions: This qualitative study provides novel insight into the availability, delivery, and use of post-diagnostic care and support in Malaysia from the perspective of care providers. The respondents in this study perceived that while there was a provision for dementia care in the hospital and community settings, the different care sectors are largely unaware of the services each provides. Future work should explore how care provision across different service sectors and providers can be supported to better facilitate patient access and referral between primary, secondary, and social care. The importance of supporting families to understand dementia and its progression, and strategies to help them care for relatives was emphasised. There is also a need for broad workforce training and development, at both the postgraduate and undergraduate levels, as well as improved general awareness in the community to encourage earlier help-seeking for symptoms of dementia. This will enable the use of preventive strategies and access to specialist services to optimise care and quality of life for people living with dementia in Malaysia.

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Section: Discussionmentioning

confidence: 99%

A Qualitative Study on Formal and Informal Carers' Perceptions of Dementia Care Provision and Management in Malaysia

Goodson

McLellan

Rosli

et al. 2021

Front. Public Health

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“… Finding ways for people to “try out“ care solutions can enhance involvement in decision making and DFC outcomes. Guest 40 2021 South Carolina, USA. Caregivers providing support to people living in the community.…”

Section: Methodsmentioning

confidence: 99%

“… 26 , 28 , 29 , 31 , 32 , 36 , 37 , 40 , 43 The majority of articles ( n =12) 25 , 27–30 , 33–35 , 37–39 , 42 included multiple stakeholders, including those living with dementia; there were three studies 26 , 32 , 41 including only people living with dementia, and others solely focused on other stakeholders, for example employers ( n =1), 43 caregivers ( n =1) 40 or health and social care professionals ( n =2). 31 , 36 The papers reviewed were drawn primarily from Canada ( n =6), 25–29 , 41 and the UK ( n =5), 35 , 36 , 38 , 42 , 43 with others from Ireland ( n =2), 31 , 32 Australia ( n =2), 30 , 37 the USA ( n =1), 40 the Netherlands ( n =1), 33 Sweden ( n =1) 34 and Taiwan ( n =1). 39 Most studies ( n =15) 25–27 , 29–31 , 33–35 , 37–40 , 42 , 43 focused on engaging and including those living in the community (which included two studies focusing on attending day provision or clinics within a hospital 35 , 39 ), two studies focused on care homes settings 28 , 32 and two focused on the hospital setting.…”

Section: Methodsmentioning

confidence: 99%

“…Studies focusing on dementia friendly initiatives in the UK 38 and Taiwan 39 demonstrated the need for raising awareness of dementia within society as a whole, for the goal of achieving better outcomes of those living with dementia to be a reality. Initiatives designed to provide education, such as Guest and Smith’s 40 presentation of work designed to enable caregivers to support their loved one with dementia, similarly, demonstrate the benefits of increasing knowledge to enable DF outcomes for the person living with dementia. Research 43 also demonstrates a need for education for employers to support workers with dementia, and also by implication employees with care-giving responsibilities, for the principles of human rights, as they apply to the DF movement, to be protected.…”

Section: Methodsmentioning

confidence: 99%

“…Engaging caregivers from African-American backgrounds required cultural sensitivity, 40 and as Wu et al argue 39 it is important to appreciate wider cultural norms and understandings of dementia where lack of awareness and understanding of dementia is prevalent. This implies a need for contextual sensitivity.…”

Section: Methodsmentioning

confidence: 99%

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Dementia Friendly Care: Methods to Improve Stakeholder Engagement and Decision Making

Innes¹,

Smith²,

Bushell³

2021

JHL

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Dementia friendly (DF) is a term that has been increasingly used in the international literature to describe approaches that include and involve people living with dementia within their communities and wider society. How to support the involvement of people living with dementia to achieve dementia friendly care or support outcomes is an area that has begun to receive attention. We begin by introducing the concept of dementia friendly, the policy context and what has already been evidenced via prior reviews and conceptual discussions. We conducted a systematic review following PRISMA guidelines, resulting in the inclusion of nineteen papers that reported on the methods and approaches used to involve people living with dementia in achieving dementia friendly or supportive care outcomes. Five primary themes were identified: the potential of group-based activities to facilitate inclusion and engagement; achieving engagement in decision making; the value of developing tools to help service providers to engage those living with dementia in care decisions; the role of awareness raising and education to support the inclusion of a range of stakeholders in achieving DF support and care outcomes; the need for cultural and contextual sensitivity when seeking to engage stakeholders to achieve positive care outcomes. We conclude by considering how both the underpinning ethos of social citizenship and social inclusion need to be in place alongside a range of approaches that are adapted to fit local contexts and needs to enable the involvement of people living with dementia in achieving dementia friendly care outcomes.

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2022 Alzheimer's disease facts and figures

2022

Alzheimer's & Dementia

1,446

664

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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 family caregivers, the dementia workforce and society. The Special Report discusses consumers' and primary care physicians' perspectives on awareness, diagnosis and treatment of mild cognitive impairment (MCI), including MCI due to Alzheimer's disease. An estimated 6.5 million Americans age 65 and older are living with Alzheimer's dementia today. This number could grow to 13.8 million by 2060 barring the development of medical breakthroughs to prevent, slow or cure AD. Official death certificates recorded 121,499 deaths from AD in 2019, the latest year for which data are available. Alzheimer's disease was officially listed as the sixth-leading cause of death in the United States in 2019 and the seventh-leading cause of death in 2020 and 2021, when COVID-19 entered the ranks of the top ten causes of death. Alzheimer's remains the fifth-leading cause of death among Americans age 65 and older. Between 2000 and 2019, deaths from stroke, heart disease and HIV decreased, whereas reported deaths from AD increased more than 145%. More than 11 million family members and other unpaid caregivers provided an estimated 16 billion hours of care to people with Alzheimer's or other dementias in 2021. These figures reflect a decline in the number of caregivers compared with a decade earlier, as well as an increase in the amount of care provided by each remaining caregiver. Unpaid dementia caregiving was valued at $271.6 billion in 2021. Its costs, however, extend to family caregivers' increased risk for emotional distress and negative mental and physical health outcomes -costs that have been aggravated by COVID-19. Members of the dementia care workforce have also been affected by COVID-19. As essential care workers, some have opted to change jobs to protect their own health and the health of their families. However, this occurs at a time when more members of the dementia care workforce are needed. Average per-person Medicare payments for services to beneficiaries age 65 and older with AD or other dementias are almost three times as great as payments for beneficiaries without these conditions, and Medicaid payments are more than 22 times as great. Total payments in 2022 for health care, long-term care and hospice services for people age 65 and older with dementia are estimated to be $321 billion. A recent survey commissioned by the Alzheimer's Association revealed several barriers to consumers' understanding of MCI. The survey showed low awareness of MCI among Americans, a reluctance among Americans to see their doctor after noticing MCI symptoms, and persistent challenges for primary care physicians in diagnosing MCI. Survey results indicate the need to improve MCI 700

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In Our Community, Dementia Speaks: Pilot of a person-centered training targeting African-American caregivers of persons-living with dementia (innovative practice)

Cited by 9 publications

References 5 publications

A Qualitative Study on Formal and Informal Carers' Perceptions of Dementia Care Provision and Management in Malaysia

A Qualitative Study on Formal and Informal Carers' Perceptions of Dementia Care Provision and Management in Malaysia

Dementia Friendly Care: Methods to Improve Stakeholder Engagement and Decision Making

2022 Alzheimer's disease facts and figures

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