Advance care planning in dementia

This paper offers a unique set of evidence-based clinical recommendations for Advance Care Planning in people living with dementia | BMC Palliative Care

Background

Advance care planning (ACP) is a continuous, dynamic process of reflection and dialogue between an individual, those close to them and their healthcare professionals, concerning the individual’s preferences and values concerning future treatment and care, including end-of-life care. Despite universal recognition of the importance of ACP for people with dementia, who gradually lose their ability to make informed decisions themselves, ACP still only happens infrequently, and evidence-based recommendations on when and how to perform this complex process are lacking. We aimed to develop evidence-based clinical recommendations to guide professionals across settings in the practical application of ACP in dementia care.

Methods

Following the Belgian Centre for Evidence-Based Medicine’s procedures, we 1) performed an extensive literature search to identify international guidelines, articles reporting heterogeneous study designs and grey literature, 2) developed recommendations based on the available evidence and expert opinion of the author group, and 3) performed a validation process using written feedback from experts, a survey for end users (healthcare professionals across settings), and two peer-review groups (with geriatricians and general practitioners).

Results

Based on 67 publications and validation from ten experts, 51 end users and two peer-review groups (24 participants) we developed 32 recommendations covering eight domains: initiation of ACP, evaluation of mental capacity, holding ACP conversations, the role and importance of those close to the person with dementia, ACP with people who find it difficult or impossible to communicate verbally, documentation of wishes and preferences, including information transfer, end-of-life decision-making, and preconditions for optimal implementation of ACP. Almost all recommendations received a grading representing low to very low-quality evidence.

Conclusion

No high-quality guidelines are available for ACP in dementia care. By combining evidence with expert and user opinions, we have defined a unique set of recommendations for ACP in people living with dementia. These recommendations form a valuable tool for educating healthcare professionals on how to perform ACP across settings.

Full article: Piers, R. et al. | Advance care planning in dementia: recommendations for healthcare professionals | BMC Palliative Care | 2018  Vol.17 :88

Reducing the risk of dementia

Risk reduction of cognitive decline and dementia | The World Health Organisation

Image source: apps.who.int/

These WHO guidelines provide evidence-based recommendations on lifestyle behaviours and interventions to delay or prevent cognitive decline and dementia.  Worldwide, around 50 million people have dementia and, with one new case every three seconds, the number of people with dementia is set to triple by 2050. The increasing numbers of people with dementia, its significant social and economic impact and lack of curative treatment, make it imperative for countries to focus on reducing modifiable risk factors for dementia.

These guidelines are intended as a tool for health care providers, governments, policy-makers and other
stakeholders to strengthen their response to the dementia challenge.

Full document: Risk reduction of cognitive decline and dementia

See also: WHO press release

Supporting carers: guidance and case studies

Local Government Association | December 2018 |  Supporting carers: guidance and case studies

6.5 million people in the UK are classed as carers, a figure equivalent to 10 per cent of the population.  This includes the more than 3 million carers between the ages of 50 and 64 (2 million) and 65+ (1.3 million). As well as approximately 166,000 under 18s with caring
responsibilities in England currently. The majority of carers (approximately 40 per cent), care for their parents or parents-in-law, while over a quarter look after their spouse or partner. Caring for disabled children, both adult and under 18, accounts for 1 in 7 cases.

The care that is provided by carers is worth an estimated £132 billion, about the same amount that is spent on the NHS in England.

Key statistics

• 1 in 10 people are carers
• 40 per cent increase in carers predicted over next 20 years
• £132 billion worth of care provided by carers
• 1 in 5 carers are aged over 65
• 1.4 million carers provide over 50 hours of care a week
• 7 in 10 have suffered mental ill health and 6 in 10 physical ill health from caring
• 166,363 young carers in England – a fifth higher than a decade previously
• 1 in 12 young carers is caring for more than 15 hours a week
• 1 in 20 misses school because of their caring responsibilities
• young carers are 1.5 times more likely to have a long-term illness, special educational needs or a disability
• there are 670,000 unpaid carers of people with dementia in the UK
• two thirds of people with dementia live at home and most are supported by unpaid carers.

The pressures of being a carer can place a burden on physical and mental health. Carers
are more likely to suffer depression, anxiety and stress and nearly two-thirds of carers
have a long-standing health condition.

Supporting carers: guidance and case studies, a publication from Local Government Association highlights current examples of how councils support adult and young carers locally in a range of different ways from respite breaks to discount cards to tailored information and advice.

The publication includes a case study from Carers Leeds (Source: Local Government Association).

 

Summary of key recommendations from NICE guidance

The latest edition of the NICE Bites newsletter provides a useful summary of the latest NICE guideline on the subject of dementia, which was released in June 2018.

NICE Bites is a monthly prescribing bulletin published by North West Medicines Information centre which summarises key recommendations from NICE guidance. NICE Bites No 111 October 2018 includes one topic: Dementia; assessment, management and support for people living with dementia and their carers. Sections covered include: diagnosis, review after diagnosis, involving people in decision-making, providing information, pharmacological treatment, managing non-cognitive symptoms, assessing and managing co-morbidities, risks during hospital admission, palliative care.

Full reference: Dementia; Assessment, Management and Support for People Living With Dementia and Their Carers (NICE Bites)

Full guideline: Dementia: assessment, management and support for people living with dementia and their carers – guidance (NG97)  | National Institute for Health and Care Excellence (NICE) | June 2018.

The Dementia Care Pathway

National Collaborating Centre for Mental Health (NCCMH) | July 2018 | The Dementia Care Pathway: 

The National Collaborating Centre for Mental Health (NCCMH) have released The Dementia Care Pathway, this full implementation guidance outlines the dementia care pathway and associated benchmarks to support improvements in the delivery and quality of care and support, for people living with dementia and their families and carers.

It accompanies and builds on a shorter guide published by NHS England Implementation guide and resource pack for dementia care (see below) and contains key commissioning and service development considerations (Source: RCPSYCH).

Image source: rcpsych.ac.uk

The Dementia Care Pathway: Full implementation guidance
Related:

Appendices and helpful resources 

Dementia Care Plan 

Implementation guide and resource pack for dementia care

Updated NICE guidance

The National Institute for Health and Care Excellence (NICE) have updated their guidance on the management and support of dementia.  This is the first time the guideline has been updated in 10 years, and acts as a reference for best practice for all those working in the health and social care field, including GPs, and social workers.

A NICE spokesman said the key changes are the recommendations around training staff correctly and those to help carers to better support people living with dementia.

It also recommends providing people living with dementia with a single named health or social care professional who is responsible for coordinating their care.

The updated guidance also recommends that the initial assessment includes taking a history (including cognitive, behavioural and psychological symptoms, and the impact symptoms have on their daily life) from the person with suspected dementia, and if possible, from someone who knows the person well.

Full guideline: Dementia: assessment, management and support for people living with dementia and their carers (NG97)

See also: New NICE guidelines recommend telling people about dementia research opportunities

 

Meeting the needs of people with dementia and learning disabilities

This guide is part of a series of guides looking at reasonable adjustments in a specific service area | Public Health England

It is intended to help staff in public health, health services and social care to ensure that their services are accessible to people with learning disabilities who may have, or be developing, dementia. The guide can also be of use to family and friends of people with learning disabilities.

Full guidance: Dementia and people with learning disabilities: making reasonable  adjustments