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While we strive to provide access to quality hospice palliative care for all that would benefit, evidence suggests that people with dementia do not receive palliative care at the same rate as the general population. This can be related to this population not routinely being referred for palliative care or existing end-of-life care models not being responsive to people with dementia and their family or carers.
As part of an effort to co-design a pilot model of care for people with dementia, Lewis (2023) and colleagues conducted a literature review to identify best-practice models of care for people in the advanced stages of dementia, and their families and carers. For the purposes of this review, model of care was defined as “a multi-dimensional concept which defines the underlying principles and core components of healthcare and other services delivered to patient or population groups, including how a person might access and travel through such services.”
The review included studies that described a model of care, (including care coordination), in any care setting for people with dementia in the last year of life. Further, the review included studies that described a palliative approach to care from all care providers and/or a specialist palliative care service at the end of life.
A total of 19 articles, describing 12 models of care were included. Each model was analyzed against a nine-domain end-of-life model of care framework, which included: person-centered care; family care, grief and support; continuity, coordination and integration of care; interdisciplinary collaboration and communication; education; symptom and comfort care; prognostication, death and dying; psychosocial and spiritual support; and ethical and practical issues.
This analysis revealed that not all domains of optimal palliative care were met in the models, and for some models, the supporting evidence for each domain was difficult to identify. The domains with the least evidence include ethical and practical issues, followed by psychosocial and spiritual support and person-centred care.
Further, from the analysis, four main issues emerged as key to consider in developing a pilot model of care including, referral and admission to care, integration of care, evaluation of models of care and sustainability.
Four main issues emerged as key to consider in developing a local pilot model of care:
- Referral and admission to care – tools that rely on a chronological disease trajectory are less useful for people with advanced dementia. A needs-based approach may be more beneficial.
- Integration of care – models of care that included care across different care settings were better aligned with the optimal domains of palliative care for people with advanced dementia.
- Evaluation of models of care – further work is needed to develop evaluation methodologies including: outcome measures, patient and carer experience measures and quality indicators for process, structure and outcome.
- Sustainability – models must be context responsive and have dedicated funding to be sustainable.
The models examined in the article may offer guidance in developing and implementing best-practice, context-responsive models of end-of-life care for people with dementia.
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Source: Lewis S, Triandafilidis Z, Curryer C, et al. Models of care for people with dementia approaching end of life: A rapid review. Palliative Medicine. 2023;0(0). doi:10.1177/02692163231171181
