11 research outputs found
Support at Home: Interventions to Enhance Life in Dementia (SHIELD) – evidence, development and evaluation of complex interventions
Background: Dementia is a national priority and this research addresses the Prime Minister’s commitment
to dementia research as demonstrated by his 2020 challenge and the new UK Dementia Research Institute.
In the UK > 800,000 older people have dementia. It has a major impact on the lives of people with
dementia themselves, on the lives of their family carers and on services, and costs the nation ÂŁ26B per
year. Pharmacological cures for dementias such as Alzheimer’s disease are not expected before 2025. If no
cure can be found, the ageing demographic will result in 2 million people living with dementia by 2050.
People with dementia lose much more than just their memory and their daily living skills; they can also lose
their independence, their dignity and status, their confidence and morale, and their roles both within the
family and beyond. They can be seen as a burden by society, by their families and even by themselves, and
may feel unable to contribute to society. This programme of research aims to find useful interventions to
improve the quality of life of people with dementia and their carers, and to better understand how people
with dementia can be supported at home and avoid being admitted to hospital.
Objectives: (1) To develop and evaluate the maintenance cognitive stimulation therapy (MCST) for people
with dementia; (2) to develop the Carer Supporter Programme (CSP), and to evaluate the CSP and
Remembering Yesterday, Caring Today (RYCT) for people with dementia both separately and together in
comparison with usual care; and (3) to develop a home treatment package (HTP) for dementia, to field test
the HTP in practice and to conduct an exploratory trial.
Methods: (1) The MCST programme was developed for people with dementia based on evidence and
qualitative work. A randomised controlled trial (RCT) [with a pilot study of MCST plus acetylcholinesterase
inhibitors (AChEIs)] compared MCST with cognitive stimulation therapy (CST) only. The MCST implementation
study conducted a trial of outreach compared with usual care, and assessed implementation in practice.
(2) The CSP was developed based on existing evidence and the engagement of carers of people with dementia. The RCT (with internal pilot) compared the CSP and reminiscence (RYCT), both separately and
in combination, with usual care. (3) A HTP for dementia, including the most promising interventions and
components, was developed by systematically reviewing the literature and qualitative studies including
consensus approaches. The HTP for dementia was evaluated in practice by conducting in-depth field testing.
Results: (1) Continuing MCST improved quality of life and improved cognition for those taking AChEIs.
It was also cost-effective. The CST implementation studies indicated that many staff will run CST groups
following a 1-day training course, but that outreach support helps staff go on to run maintenance groups
and may also improve staff sense of competence in dementia care. The study of CST in practice found no
change in cognition or quality of life at 8-month follow-up. (2) The CSP/RYCT study found no benefits for
family carers but improved quality of life for people with dementia. RYCT appeared beneficial for the
quality of life of people with dementia but at an excessively high cost. (3) Case management for people
with dementia reduces admissions to long-term care and reduces behavioural problems. In terms of
managing crises, staff suggested more costly interventions, carers liked education and support, and people
with dementia wanted family support, home adaptations and technology. The easy-to-use home treatment
manual was feasible in practice to help staff working in crisis teams to prevent hospital admissions for
people with dementia.
Limitations: Given constraints on time and funding, we were unable to compete the exploratory trial of
the HTP package or to conduct an economic evaluation.
Future research: To improve the care of people with dementia experiencing crises, a large-scale clinical
trial of the home treatment manual is needed.
Conclusion: There is an urgent need for effective psychosocial interventions for dementia. MCST improved
quality of life and was cost-effective, with benefits to cognition for those on AChEIs. MCST was feasible in
practice. Both CSP and RYCT improved the quality of life of people with dementia, but the overall costs
may be too high. The HTP was useful in practice but requires evaluation in a full trial. Dementia care
research may improve the lives of millions of people across the world.
Trial registrations: Current Controlled Trials ISRCTN26286067 (MCST), ISRCTN28793457 (MCST
implementation) and ISRCTN37956201 (CSP/RYCT).
Funding: This project was funded by the National Institute for Health Research (NIHR) Programme Grants
for Applied Research programme and will be published in full in Programme Grants for Applied Research;
Vol. 5, No. 5. See the NIHR Journals Library website for further project information