Supporting adult carers

Supporting adult carers | NICE guideline [NG150] | Published January 2020

This guideline covers support for adults (aged 18 and over) who provide unpaid care for anyone aged 16 or over with health or social care needs. It aims to improve the lives of carers by helping health and social care practitioners identify people who are caring for someone and give them the right information and support. It covers carers’ assessments, practical, emotional and social support and training, and support for carers providing end of life care.

This guideline covers general principles that apply to all adult carers. Recommendations about supporting carers of people with specific health needs can be found in NICE guidance on those conditions.

This guideline includes recommendations on:

• information and support for carers
• identifying carers and assessing their needs
• helping carers stay in, enter or return to work, education and training
• social and community support for carers
• training to provide care and support
• psychological and emotional support for carers
• support during changes to the caring role and during end of life care

See also:  NICE interactive flowchart – Supporting adult carers

Dementia, spirituality and palliative care

Palmer, J. et al. | Research literature on the intersection of dementia, spirituality, and palliative care: A scoping review | Journal of Pain and Symptom Management | published online | January 2020

Abstract

Context

Dementia marks an increasingly prevalent terminal illness for which palliative care, including spiritual care, could improve quality of life. Research gaps exist in understanding the intersection of dementia, spirituality, and palliative care.

Objectives

We conducted the first scoping review examining the nature and breadth of peer-reviewed studies across these three topics to guide future research.

Methods

The scoping review followed methods from The Joanna Briggs Institute Reviewers’ Manual (2015). We developed a priori a scoping review protocol outlining the Population, Concept and Context for study, data sources, search strategy, inclusion/exclusion criteria, and procedure for screening, extracting, and analyzing data.

Results

The final sample consisted of 19 studies with the following themes: Characterizing Spiritual Needs, Preferences, and Resources; Characterizing Palliative or Spiritual Care; Predicting Provision of Spiritual Care; and Assessing Spiritual Care Interventions. Eighteen studies were published in the past decade, and eleven were based in Europe. The majority of studies focused on long-term care settings, grouped stages of dementia or did not specify dementia stage, and investigated interventions indirectly related to spiritual care. Many studies were limited in sample size and in generalizability/ transferability and used less sophisticated research designs.

Conclusions

Research across dementia, spirituality, and palliative care needs to examine distinct stages of dementia, settings beyond long-term care, and formal spiritual care interventions plus utilize rigorous study designs (e.g., randomized clinical trials). Such research could advance practice and policy that enhance quality of life for tens of millions of persons with dementia and their family members worldwide.

Dementia and housing

Dementia and Housing | Social Care Institutute for Excellence

image source: https://www.scie.org.uk/

The quality of life for someone living with dementia is affected by where and how they live. The Prime Minister’s Challenge on Dementia 2020 (2015) states that, by 2020 we wish to see an increased number of people with dementia being able to live longer in their own homes when it is in their interests to do so, with a greater focus on independent living.

Two-thirds of people with dementia live in the community in a range of different housing types. Most live in mainstream housing, with a third living on their own.

The British Standards Institute and the Alzheimer’s Society have developed a Code of Practice for the housing sector. It identifies key areas that will help to support people living with dementia. They include:

• adaptations, built environment, design and access to outdoor space
• assistive technologies, including telecare
• training of all staff in the housing sector

Sometimes, simple changes made to an existing property can support the wellbeing and independence of someone with dementia, allowing them to remain in their home for longer, as well as reducing pressures on carers.

This resource from the Social Care Institutute for Excellence (SCIE) contains information and links on the subject of housing.

Full detail: Dementia and Housing | SCIE

Finding a life-changing treatment for dementia

Alzheimer’s Research UK has called on government to invest in six priority research areas, which will help to deliver a life-changing treatment for dementia

Image source: https://www.alzheimersresearchuk.org/

In their 2019 manifesto, the Conservative party pledged to launch a “Dementia Moonshot” to find a cure for dementia – doubling research funding and speeding up trials for new treatments.

Alzheimer’ Research UK are now calling for action to deliver on those commitments. In this publication, Alzheimer’s UK puts forward the steps government must take to deliver its Moonshot ambition of finding a life-changing treatment for dementia.

 

 

These are:

1. Find ways to detect the diseases that cause dementia 10-15 years earlier, to broaden the search for new treatments and intervene with those most at risk of developing dementia.
2. Find ways to more effectively validate novel targets in early drug development to maximise chances of successful clinical trials.
3. Make the UK the best place to conduct clinical dementia research.
4. Expand research infrastructure to maintain the UK’s position as a world leader in dementia research.
5. Further our understanding of dementia risk reduction and prevention and dementia in the context of multi-morbidities.

Full document: Delivering the Dementia Moonshot: A plan to find life-changing treatments 

Informal caregiving for dementia patients: the contribution of patient characteristics and behaviours to caregiver burden

Allen, A. P. et al. | Informal caregiving for dementia patients: the contribution of patient characteristics and behaviours to caregiver burden| Age and Ageing | Volume 49, Issue 1, January 2020 | Pages 52–56

Abstract
Objectives
The burden often associated with informal caregiving for patients with dementia is associated with negative effects on health, both physiologically and in terms of caregiver cognition. There is wide variation in the level of burden experienced by dementia caregivers. To better understand caregiver burden, it is thus important to understand the factors associated with level of burden.

Methods
In the current study, we collected carer burden and putative associated factors at baseline, 6 and 12 months. Hierarchical regression was used to assess the impact of these factors on caregiver burden. We assessed self-reported carer burden, patient behavioural and safety issues, and level of difficulty associated with providing assistance with activities of daily living (ADL). Patients’ age was also recorded, and trained nurses assessed patient cognitive performance using the quick mild cognitive impairment screen.

Results
At baseline, patients’ age, cognition and ADLs were associated with burden, and safety and challenging behaviour were both significantly associated with burden independent of the other factors. Change in burden was associated with change in carer-reported safety at 6-month follow-up, and with change in safety and change in carer-reported challenging behaviours at 12-month follow-up.

Conclusions
Safety issues and challenging behaviours are associated with carer burden, even after accounting for cognitive and functional impairment in the person with dementia. As dementia progresses, monitoring these factors may help to inform stress-management strategies for caregivers.