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.
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.
We conducted the first scoping review examining the nature and breadth of peer-reviewed studies across these three topics to guide future research.
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.
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.
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 | Social Care Institutute for Excellence
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.
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
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.
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.
Find ways to more effectively validate novel targets in early drug development to maximise chances of successful clinical trials.
Make the UK the best place to conduct clinical dementia research.
Expand research infrastructure to maintain the UK’s position as a world leader in dementia research.
Further our understanding of dementia risk reduction and prevention and dementia in the context of multi-morbidities.
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.
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.
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.
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.