The dignity in advanced dementia (diadem) study: Developing an integrated geriatric palliative homecare program

Hum, Allyn; Wu, Huei Yaw; Ali, Noorhazlina; Leong, Ian Yi Onn; Chin, Jeffery; Lee, Angel Ok; Tay, Ri Yin; Koh, Mervyn

doi:10.1080/09699260.2018.1442286

Cited by 12 publications

(20 citation statements)

References 32 publications

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“…In contrast, underpinned by the personcentered care framework, the biopsychosocial approach to dementia care emphasizes understanding the actual persons behind the illness, addressing their needs holistically, and improving their QOL [3,4]. The gap between biomedical-centric and person-centric care approaches is especially noteworthy in advanced dementia, leading to renewed calls to bridge it [5,6].…”

Section: Introductionmentioning

confidence: 99%

Bridging Biomedical and Person-centered Care Approaches via Namaste Care with Family Participation: An Asian Experience in Advanced Dementia Treatment

Ali¹,

Tan²,

Kang³

et al. 2020

OBM Geriatrics

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A locally-adapted, multisensory, psychosocial intervention called Namaste Care program was developed to improve the daily life of persons with advanced dementia (PwAD) through arranging meaningful activities and physical interactions by healthcare staff (Namaste Carers). Congruent with Asian values, the families of PwAD were invited to participate in Namaste Care sessions. The study aimed to explore the influence of Namaste Care on cognitive status and quality of life (QOL) of PwAD, and perceptions and attitudes of caregivers and Namaste Carers toward dementia care were determined. A total of 10 individuals, including patient-caregiver dyads (n = 4) and Namaste Carers (n = 6) participated in a program in a tertiary hospital in Singapore. Quality of Life in Late-Stage Dementia (QUALID) scale and Severe Impairment Rating Scale (SIRS) were employed to evaluate QOL and cognition, respectively, in the pre- and post-survey program in patient-caregiver dyads. Namaste Carers’ knowledge and attitudes toward PwAD were assessed using the Questionnaire on Palliative Care for Advanced Dementia (qPAD). Caregivers and Namaste carers were interviewed post-program separately. A concurrent explanatory mixed-method analysis was done. The mean age of PwAD was 84 years, with 75% (n = 3) patients on enteral tube feeding. Namaste carers were nurses with an average experience of 4.1 years in dementia care. On comparison of pre- and post-program scores of PwAD, QUALID scores showed a decrease (indicating an improvement in the QOL), while the SIRS scores were increased (indicating an improved cognitive response). Namaste Carers scored high on qPAD, reflecting the good understanding and a positive attitude toward PwAD. Thematic analysis of 10 interview transcripts from caregivers and Namaste Carers revealed three themes: the polarizing paradigm of care in advanced dementia; pre-eminence of the Asian family values, and theme of “small actions make a big difference”. Namaste Care served as a bridge between the person-centered care approach and the biomedical model of dementia care. Namaste Care with family participation may be the cornerstone of PwAD to receive culturally-appropriate personalized care and serve as a premise for the operationalization of person-centered care in Asian societies, and undeniably across the world.

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Section: Introductionmentioning

confidence: 99%

Bridging Biomedical and Person-centered Care Approaches via Namaste Care with Family Participation: An Asian Experience in Advanced Dementia Treatment

Ali¹,

Tan²,

Kang³

et al. 2020

OBM Geriatrics

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“…Of the 17 studies, 9 reported on the impact of a palliative approach in the care of older adults with dementia in primary care settings and examined a variety of interventions and outcome measures (Carduff et al, 2016; Clevenger et al, 2018; Daaleman et al, 2019; Holley et al, 2009; Hum et al, 2018; London et al, 2005; Nakanishi et al, 2017; Sternberg et al, 2019; Treloar et al, 2009) (See Table 3. for details on these outcomes).…”

Section: Resultsmentioning

confidence: 99%

“…Eight of nine studies involved patients in the advanced stage of the disease, whereas one did not report the dementia stage (Daaleman et al, 2019). The outcomes describing the impact of a palliative approach were focused on the impacts on patient-related outcomes, most of which were reported by caregivers and/or assessed by health care practitioners, as described in the following paragraphs (Clevenger et al, 2018; Holley et al, 2009; London et al, 2005; Nakanishi et al, 2017; Sternberg et al, 2019; Treloar et al, 2009); caregiver-related outcomes (Carduff et al, 2016; Clevenger et al, 2018; Holley et al, 2009; Sternberg et al, 2019; Treloar et al, 2009); and health care utilization (Clevenger et al, 2018; Daaleman et al, 2019; Holley et al, 2009; Hum et al, 2018; London et al, 2005; Sternberg et al, 2019; Treloar et al, 2009). Table 3 presents significant findings from the studies related to the impact of this approach.…”

Section: Resultsmentioning

confidence: 99%

“…As a result, it not only helped frame a nebulous concept that was useful in organizing the data synthesis but stands a higher likelihood of being useful in clinical practice. Of the 17 studies, 8 addressed the perspectives of physicians and/or nurses, whereas, 9 studies reported on the impact of a palliative approach in the care of older adults with dementia in primary care settings (Carduff et al, 2016;Clevenger, Cellar, Kovaleva, Medders, & Hepburn, 2018;Daaleman et al, 2019;Holley, Gorawara-Bhat, Dale, Hemmerich, & Cox-Hayley, 2009;Hum et al, 2018;London, McSkimming, Drew, Quinn, & Carney, 2005;Nakanishi, Hirooka, Morimoto, & Nishida, 2017;Sternberg et al, 2019;Treloar, Crugel, & Adamis, 2009). Eight of nine studies involved persons with late stage of dementia, whereas one study did not report the dementia stage (Daaleman et al, 2019).…”

Section: Discussionmentioning

confidence: 99%

“…Details on the characteristics of the health care practitioners are provided in Supplement D.Table1summarizes the features of a palliative approach addressed in the included studies based on our operationalized definition. Ten of the 17 studies highlighted all four features; that is, ACP, pain and symptom management, psychosocial and spiritual support, and shared decision making(Brazil et al, 2015;Clevenger et al, 2018;Daaleman et al, 2019;Davies et al, 2014;Evans et al, 2014;Holley et al, 2009;Hum et al, 2018;London et al, 2005;Ryan et al, 2012;Treloar et al, 2009), whereas the remaining studies, except one(Carduff et al, 2016), addressed at least two. No study reported a feature that is not captured in our definition.…”

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confidence: 99%

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Integration of a Palliative Approach in the Care of Older Adults with Dementia in Primary Care Settings: A Scoping Review

et al. 2021

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A palliative approach to care aims to meet the needs of patients and caregivers throughout a chronic disease trajectory and can be delivered by non-palliative specialists. There is an important gap in understanding the perspectives and experiences of primary care providers on an integrated palliative approach in dementia care and the impact of existing programs and models to this end. To address these, we undertook a scoping review. We searched five databases; and used descriptive numerical summary and narrative synthesizing approaches for data analysis. We found that: (1) difficulty with prognostication and a lack of interdisciplinary and intersectoral collaboration are obstacles to using a palliative approach in primary care; and (2) a palliative approach results in statistically and clinically significant impacts on community-dwelling individuals, specifically those with later stages of dementia. There is a need for high-quality research studies examining the integrated palliative approach models and initiation of these models sooner in the care trajectory for persons living with mild and moderate stages of dementia in the community.

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Health, social care and technological interventions to improve functional ability of older adults living at home: An evidence and gap map

Welch

Mathew

Babelmorad

et al. 2021

Campbell Systematic Reviews

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Background By 2030, the global population of people older than 60 years is expected to be higher than the number of children under 10 years, resulting in major health and social care system implications worldwide. Without a supportive environment, whether social or built, diminished functional ability may arise in older people. Functional ability comprises an individual's intrinsic capacity and people's interaction with their environment enabling them to be and do what they value. Objectives This evidence and gap map aims to identify primary studies and systematic reviews of health and social support services as well as assistive devices designed to support functional ability among older adults living at home or in other places of residence. Search Methods We systematically searched from inception to August 2018 in: MEDLINE, EMBASE, Cochrane Database of Systematic Reviews, CENTRAL, CINAHL, PsycINFO, AgeLine, Campbell Library, ASSIA, Social Science Citation Index and Social Policy & Practice. We conducted a focused search for grey literature and protocols of studies (e.g., ProQuest Theses and Dissertation Global, conference abstract databases, Help Age, PROSPERO, Cochrane and Campbell libraries and http://ClinicalTrials.gov). Selection Criteria Screening and data extraction were performed independently in duplicate according to our intervention and outcome framework. We included completed and on‐going systematic reviews and randomized controlled trials of effectiveness on health and social support services provided at home, assistive products and technology for personal indoor and outdoor mobility and transportation as well as design, construction and building products and technology of buildings for private use such as wheelchairs, and ramps. Data Collection and Analysis We coded interventions and outcomes, and the number of studies that assessed health inequities across equity factors. We mapped outcomes based on the International Classification of Function, Disability and Health (ICF) adapted categories: intrinsic capacities (body function and structures) and functional abilities (activities). We assessed methodological quality of systematic reviews using the AMSTAR II checklist. Main Results After de‐duplication, 10,783 records were screened. The map includes 548 studies (120 systematic reviews and 428 randomized controlled trials). Interventions and outcomes were classified using domains from the International Classification of Function, Disability and Health (ICF) framework. Most systematic reviews (n = 71, 59%) were rated low or critically low for methodological quality. The most common interventions were home‐based rehabilitation for older adults (n = 276) and home‐based health services for disease prevention (n = 233), mostly delivered by visiting healthcare professionals (n = 474). There was a relative paucity of studies on personal mobility, building adaptations, family support, personal support and befriending or friendly visits. The most measured intrinsic capacity domains were mental functio...

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The dignity in advanced dementia (diadem) study: Developing an integrated geriatric palliative homecare program

Cited by 12 publications

References 32 publications

Bridging Biomedical and Person-centered Care Approaches via Namaste Care with Family Participation: An Asian Experience in Advanced Dementia Treatment

Bridging Biomedical and Person-centered Care Approaches via Namaste Care with Family Participation: An Asian Experience in Advanced Dementia Treatment

Integration of a Palliative Approach in the Care of Older Adults with Dementia in Primary Care Settings: A Scoping Review

Health, social care and technological interventions to improve functional ability of older adults living at home: An evidence and gap map

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