A tool to aid talking about dementia and dying – Development and evaluation

Stirling, CM; McInerney, Fran; Andrews, Sharon; Ashby, Michael; Toye, Christine; Donohue, Catherine M.; Banks, Sheila; Robinson, Andrews

doi:10.1016/j.colegn.2013.08.002

Cited by 15 publications

(44 citation statements)

References 40 publications

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“…The data were collected in the course of two projects conducted across three Australian states. Other aspects of these projects were reported elsewhere (21,22). Approval was granted by the human research ethics committees in each of the Australian states.…”

Section: Methods Proceduresmentioning

confidence: 99%

Who Knows, who Cares? Dementia Knowledge among Nurses, Care Workers, and Family members of People Living with Dementia

et al. 2014

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The number of people with dementia is increasing rapidly worldwide. Commensurate with population ageing, the use of nursing homes in Australia (known as residential aged care facilities) for individuals with dementia is growing. As a terminal condition, dementia is best managed by instituting a palliative approach to care. A good knowledge of dementia, including its progression and management, among staff and families of people living with dementia is essential for clear decision making and the provision of appropriate care. Yet there is limited information regarding relative levels of dementia knowledge. This paper reports the results of a study that assessed dementia knowledge among these two cohorts using the Dementia Knowledge Assessment Tool; the study surveyed 279 staff members and 164 family members of residents with dementia. Dementia knowledge deficits were evident in both cohorts across a range of areas. It is critical that dementia knowledge deficits are identified and addressed in order to support evidencebased dementia care. Résumé / Le nombre de personnes atteintes de démence augmente rapidement à travers le monde. Ainsi on remarque en Australie une augmentation du nombre de ces malades admis dans les institutions de soins de longue durée. La démence étant une maladie terminale il appert que l'approche palliative est la meilleure forme de soins. Cependant, il est essentiel que le personnel soignant autant que les familles aient une bonne connaissance de la maladie, de ses symptomes, de la façon de traiter les maladies, et des décisions à prendre. Or, on en sait très peu quant au niveau de connaissances de ces deux groupes de personnes sur le sujet. Cet article porte sur les résultats

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Section: Methods Proceduresmentioning

confidence: 99%

Who Knows, who Cares? Dementia Knowledge among Nurses, Care Workers, and Family members of People Living with Dementia

et al. 2014

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“…For one wife, the guilt she felt for placing her husband in the care home and leaving him each day after visiting was lifted 2. A daughter summarized that Namaste made visits easier, helped her re-connect with her mother and recover a meaningful role in her mother’s life Stirling et al (2014) [ 56 ] Australia Tool to aid talking about dementia and dying The tool facilitated a more open dialogue between the palliation resource nurses (a role specifically developed) and family members. These nurses as well as family members gained confidence in discussing the death of their relative with dementia.…”

Section: Resultsmentioning

confidence: 99%

“…In eight of the included studies [ 31 , 36 , 37 , 43 , 49 , 51 , 53 , 56 ], the inclusion of family members in formal decisions within the nursing homes was fostered through interventions aimed at giving family members the opportunity to decide about the residents’ end-of-life care in the nursing home. In the study by Mariani et al [ 45 ], people with dementia and their family members were involved in care planning and the development of personalized care plans.…”

Section: Resultsmentioning

confidence: 99%

“…In another study [ 42 ], the ‘Family Biography Workshop,’ in which family and staff members collaboratively develop biographies for people with dementia, was tested. Family members in included studies participated in formal discussions with direct care staff ( n = 6) [ 31 , 37 , 42 , 45 , 51 , 56 ], discussions with a palliative care team ( n = 1) [ 49 ], and/or in discussions with an intervention coordinator/facilitator, without talking directly with direct care staff ( n = 4) [ 36 , 43 , 49 , 53 ]. In one study [ 53 ], family members could attend an educational session prior to the discussion.…”

Section: Resultsmentioning

confidence: 99%

“…In three studies [ 43 , 45 , 53 ], educational sessions for staff members were provided, focusing on how to shape family−staff interactions ( n = 2) or dementia and care-related aspects ( n = 2). In one study, the formal family−staff discussion was facilitated by providing a discussion tool to staff (tool to aid talking about dementia and dying) [ 56 ] and in two studies to family and staff (Goals of Care video decision aid) [ 37 , 51 ]. In two other studies, family members [ 36 ] or family members and staff [ 43 ] received an information booklet.…”

Section: Resultsmentioning

confidence: 99%

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Interventions to foster family inclusion in nursing homes for people with dementia: a systematic review

et al. 2020

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Background Family inclusion in nursing homes is central to the provision of individualized care for people with dementia. Although positive effects can be recognized, barriers have been identified that hamper family inclusion in nursing homes. Specifically for people with dementia, insight into the content of interventions to foster family inclusion is lacking. Methods A systematic review was performed by systematically searching the databases PubMed, Cinahl, PsycInfo and Embase. Studies were eligible if they examined (1) nursing home settings, (2) interventions to foster the inclusion of family members from people with dementia, (3) were original research articles in which effects/experiences of/with these interventions were evaluated, and (4) were written in English, Dutch or German. Findings were summarized systematically. Results Twenty-nine studies were included. Two interventions were targeted at creating family-staff partnerships from a two-way perspective. Other interventions focused on single components, such as including family members in formal decisions (n = 9), enabling them to make better informed decisions and/or participate more actively (n = 7), or providing psychoeducation for family members (n = 3). Within the interventions, family and staff members are often treated differently. Effects on actual increase in family inclusion remain unclear. Conclusions Very few interventions exist that try to enhance equal family-staff partnerships in nursing homes. Future interventions should pay specific attention to mutual exchange and reciprocity between family and staff. As little is known about promising (components of) interventions to foster family inclusion in nursing homes for people with dementia, more effectiveness research is needed.

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Caring for People with Diabetes at the End of Life

2016

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End-of-life care planning is assuming global significance. While general end-of-life care guidelines apply to diabetes, there are some diabetes-specific issues that need to be considered. These include the usual long trajectory to end-of-life care that enables clinicians and people with diabetes to proactively discuss when to change the focus of care from preventing diabetes complications (tight control) to a palliative approach. Palliative care aims to promote comfort and quality of life and reduce the unnecessary burden of care on individuals and their families. The aim of this paper is to discuss common disease trajectories and their relationship to diabetes care, outline strategies for proactively discussing these issues and suggest indications that palliative care is warranted.

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A tool to aid talking about dementia and dying – Development and evaluation

Cited by 15 publications

References 40 publications

Who Knows, who Cares? Dementia Knowledge among Nurses, Care Workers, and Family members of People Living with Dementia

Who Knows, who Cares? Dementia Knowledge among Nurses, Care Workers, and Family members of People Living with Dementia

Interventions to foster family inclusion in nursing homes for people with dementia: a systematic review

Caring for People with Diabetes at the End of Life

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