Trends in quality of care and dying perceived by family caregivers of nursing home residents with dementia 2005–2019

Klapwijk, Maartje S.; Bolt, Sascha; Boogaard, Jannie A.; Koppel, Maud ten; Gijsberts, Marie-José; Leussen, Carolien van; Meijers, J.M.M.; Schols, Jos M. G. A.; Pasman, H. Roeline W.; Deliëns, Luc; Block, Lieve Van den; Mertens, Bart; Vet, Henrica C.W. de; Caljouw, Monique A. A.; Achterberg, Wilco P.; Steen, Jenny T. van der

doi:10.1177/02692163211030831

Cited by 6 publications

(3 citation statements)

References 57 publications

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“…In our study, the offspring's support for the medical and care costs of patients support the abovementioned opinion. In conclusion, palliative care and quality of life are increasingly emphasized in Western countries [33,34], while in China, the survival period is still the paramount consideration, followed by quality of life. A positive treatment attitude explains the outcome in this study, i.e., longer survival of patients with advanced dementia in China compared to other countries.…”

Section: Discussionmentioning

confidence: 99%

Prediction of survival of advanced dementia patients using the advanced dementia prognostic tool: a 2-year prospective study

Liu

et al. 2023

Preprint

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Background There is a lack of research on life expectancy estimation in advanced dementia patients. In this prospective study, we evaluated the usefulness of the advanced dementia prognostic tool (ADEPT) for estimating the 2-year survival of patients in China. Methods Patients were recruited from nursing homes and hospitals in Chongqing, China, and followed up for 2 years. The usefulness of the ADEPT score for predicting the 2-year survival rate was evaluated using the area under the receiver operating characteristic (AUROC) curve. Results In total, 115 patients were included in the study. Of these patients, 48 died. The mean ADEPT score was 13.0. The AUROC for the prediction of the 2-year mortality rate using the ADEPT score was 0.62. The optimal threshold of ADEPT score was 11.2, which had an AUROC of 0.63, specificity of 41.8, and sensitivity of 83.3. Conclusions The ADEPT score based on a threshold of 11.2 was useful to determine the 2-year survival rate of patients with advanced dementia in Chongqing, China. The survival estimation may be used to improve the treatment of patients.

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Section: Discussionmentioning

confidence: 99%

Prediction of survival of advanced dementia patients using the advanced dementia prognostic tool: a 2-year prospective study

Liu

et al. 2023

Preprint

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“…6 The quality of end-of-life care and death experience is shaped by the care needs, preferences and experiences of both the person with dementia, and their carer and family. 47 The needs of family carers and the person with dementia are often interdependent (but not always congruent). 5,48 For example, interviews with residential aged care staff and review of case notes for people enrolled in the MMPC model of care revealed several instances in which the person with dementia had an advance care directive but their family member was reluctant for it to be followed.…”

Section: Integration Of Carementioning

confidence: 99%

Models of care for people with dementia approaching end of life: A rapid review

et al. 2023

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Background: People with dementia have different care and support needs at their end of life compared to people with other life-limiting illnesses, and general palliative care models may not meet the needs of people with dementia and their carers and families. Some dementia-specific end-of-life care models have been implemented, and a summary of existing models was undertaken to inform development of a local model. Aim: To identify best-practice models of care for people in the advanced and end stages of dementia, and their families and carers. Design: A rapid review with narrative summary of peer-reviewed articles and grey literature was conducted. Data sources: Ten databases were searched for articles published between January 2000 and April 2022. Inclusion criteria were: all care settings; AND the model focuses on people with end-stage or advanced dementia; AND contained multiple components. Results: Nineteen articles or reports, describing twelve dementia-specific models of end-of-life care in a range of care settings were identified for inclusion in the review. There is strong evidence that the principles of best practice palliative care for people with advanced dementia are well known, but limited examples of translation of this knowledge into integrated models of care. The key issues that emerged from the findings were: referral and admission to care, integration of care, sustainability and evaluation. Conclusions: Findings can be used to inform development of improved end-of-life care pathways for people with dementia, but well-designed research studies are needed to evaluate the effectiveness of integrated models of care for this vulnerable population.

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“…For its evaluation, we planned qualitative interviews, and in the nursing homes affiliated with the organization also a pre-post-test survey for bereaved family [10]. We prepared for a main, controlled study with adequate power involving another large care organization in case the pilot was successful.…”

Section: Introductionmentioning

confidence: 99%

Implementing Palliative Care Teams Specialized in Dementia in Two Countries: Experiences of Failure and Success

Steen

Leussen²,

Ballentine³

et al. 2023

JAD

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Much is known about palliative care needs of persons with dementia and their family. Less is known about how to successfully implement models that address those needs. We present specialist models in the Netherlands (2017-2018) and Northern Ireland (2016-2017) contrasting its evaluations. From implementation failure in the Netherlands compared with successful implementation in Northern Ireland, we learn that recognizing roles and competencies among all involved is essential in developing effective partnership relationships. All of this is facilitated by referral before the end of life and offering various training programs and in-patient and out-patient services and therapies to show benefits early.

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Trends in quality of care and dying perceived by family caregivers of nursing home residents with dementia 2005–2019

Cited by 6 publications

References 57 publications

Prediction of survival of advanced dementia patients using the advanced dementia prognostic tool: a 2-year prospective study

Prediction of survival of advanced dementia patients using the advanced dementia prognostic tool: a 2-year prospective study

Models of care for people with dementia approaching end of life: A rapid review

Implementing Palliative Care Teams Specialized in Dementia in Two Countries: Experiences of Failure and Success

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