There are mixed and uncertain outcomes associated with approaches to end-of-life dementia care that are based on established quality standards

Candy B, Elliott M, Moore K, et al.  UK quality statements on end of life care in dementia: A systematic review of research evidence BMC Palliative Care. 2015 October:14(51).

Review question

Do approaches to end-of-life care for dementia patients that meet quality standards established by the United Kingdom’s National Institute for Health and Care Excellence (NICE) improve the well-being of patients and their families?

Background

Patients with dementia require specialized palliative care due to the progressive, neurodegenerative nature of their disease. 

Initiatives such as the quality standards established by NICE exist to guide clinicians and policymakers to provide the most appropriate end-of-life care. These are based on evidence-based best practice guidelines.

No systematic efforts to evaluate the benefits of approaches to end-of-life care informed by NICE quality standards have been undertaken, and this study aims to determine if the approaches can lead to a meaningful impact on the well-being of dementia patients and their families.

How the review was done

A detailed search of a number of electronic databases for studies published between January 2001 and August 2014 was conducted, and studies were included if they focused on participants with moderate to advanced dementia, and on approaches to end-of-life dementia care that met the quality standards established by NICE.

A total of 5,548 studies were identified in searches, and seven were included in the review after assessments for eligibility.

This review was funded by Marie Curie Cancer Care.

What the researchers found

The review found studies that evaluated a number of different approaches, including personalized care plans, discussions of future care planning with caregivers during the early stages of dementia, and palliative-care assessments at later stages of the disease.  

Studies evaluating the impact of future care planning and palliative care assessments were limited, generally of low quality, and measured different outcomes. Thus, the overall benefits reported were mixed and no definitive conclusions can be drawn.

None of the included studies assessed the well-being and quality life of family members of the patient, adverse events, or economic costs associated with the intervention.

Conclusion

Due to the weak design and variation in outcome measures used by included studies, this review is unable to establish that approaches to end-of-life dementia care based on NICE quality standards benefit dementia patients and their families.