Improving quality of life for people with dementia living in care homes
Professor Katherine Froggatt is Chief Investigator on the Namaste Trial, an NIHR funded study into improving care for people living with dementia. She explains what the trial involves and the different stages on the research pathway:
Tell us about the Namaste Trial and what it aims to achieve.
Our study looks into improving the quality of life for people with advanced dementia living in nursing homes. Residents can often feel isolated at a time when they are in their final months of life. We are looking at whether offering residents a structured programme of care called the Namaste Care programme improves their lives. Namaste involves offering residents a regular programme of activities in a dedicated space in the nursing home to create a safe and comforting environment. A series of personalised sensory activities, such as hand massage, listening to soothing sounds, touching and feeling objects, and regular snacks and drinks are offered in regular sessions throughout the week.
Previous evidence from staff and family members suggests this type of care is beneficial for residents who can appear calmer and more responsive. Families say relatives receiving this care programme will smile, when before they were not expressing pleasure.
However, previous studies into its effectiveness have been small scale and there have not been any clinical trials to ascertain the extent to which it impacts upon a person’s quality of life.
This is a feasibility study. What does this mean?
Feasibility studies are pieces of research undertaken before a main study in order to answer the question “Can this study be done?”. Firstly, we want to see if it is possible for nursing home staff to deliver the Namaste Care programme to their residents. Secondly, we want to establish the most appropriate primary outcome measure, and how feasible is it to recruit nursing homes, and then residents, informal carers and staff in those facilities.
How many care homes and participants will it involve?
We intend to recruit eight nursing homes to the study and involve eight residents in each facility. If the residents have family members we’ll ask them to participate by filling in questionnaires to record different aspects of their relative’s quality of life from their perspective. We will also interview one staff member who knows the resident, again to collect data on their views about the resident’s quality of life.
What will the study involve for research participants?
Residents in six of the care homes will receive Namaste Care. Residents in the remaining two care homes will receive normal care. All residents will be asked to wear an Actigraph, like a wristwatch, which has sensors to measure movement and light levels so we can plot residents’ levels of activity and sleep. Family and staff will update us on the residents’ progress at baseline, two weeks, four weeks and six months, by filling in questionnaires and attending interviews.
How far along are you with the study? What are the next steps?
It’s a two year study. We started in December 2016 and finish in December 2018. If we want to use the intervention in a full trial we need to apply for more funding, which could take another year. If the full trial began in 2019 we would get the results in 2023.
What are the challenges in delivering research in care homes compared to other settings, and how you are overcoming these?
Unlike the NHS where there are organisational structures and people to support the delivery of research in NHS sites, in the care home sector we need to negotiate undertaking research with individual care homes. They are often working to their maximum staffing and there can be high staff turnover at times, so it can be difficult to fit research into their daily routines and provide ongoing commitment.
There are also challenges in conducting research involving people with advanced dementia. They are often unable to articulate a response. So we use proxy measures by involving families and staff. In order to try and obtain an objective measure of activity and sleep for the participants in this study, we will be trying out the use of an Actigraph. It will be interesting to see if the residents will tolerate wearing this, and if the device provides meaningful data about people with advanced dementia after receiving this intervention. We are seeking to address these issues in the feasibility study.
What have been the responses from care homes so far?
Our initial visits have had a positive response. Nursing home managers are interested in the study, but there are challenges in some facilities about finding a suitable space and also thinking about how to provide staff to deliver the intervention. We’ve recruited three nursing homes to date, and are discussing involvement with five others.
How is the NIHR supporting this study?
The NIHR’s Health Technology Assessment (HTA) Programme has awarded us £536,000 for the study. The NIHR’s Enabling Research in Care Homes (ENRICH) initiative is also helping us with recruitment, by approaching nursing homes that meet our inclusion criteria in the first instance.
How are patients and the public involved in delivering this research?
Two members of the Alzheimer's Society Research Network who have experience as relatives of people with dementia living and dying in care homes were involved in initial consultations about the study design and helped develop the research proposal. They sit on the project management group and work with our Public Involvement Panel (PIP) which includes relatives and friends of people with dementia living in care homes.
PIP members have already provided feedback about written materials such as the Namaste Care resource documents, Participant Information Sheets, the study leaflet and website to ensure these were written in a way which is sensitive to the people with advanced dementia and their family members and carers. We plan for PIP members to attend the launch meeting in each nursing home participating in the study and involve members in reviewing findings and dissemination activities.
Public involvement members also sit on our Trial Steering Committee and Advisory Group.
People often assume research means drug studies, but there seems to be an increasing number of trials into improving quality of life for people with dementia. Why is that?
There’s no cure for dementia so quality of life is the best goal. Quality of life studies have been done for a while, but there’s increasing recognition of and subsequent funding of non-drug and non-pharmacological interventions.
Why do you believe that studies like the Namaste Trial are important?
There is an increase in people living with dementia, but to date, studies focussing on their needs have been limited. The trial is helping us reach a population rarely involved in research studies. With potentially increased need for care for people with advanced dementia, we need to know that they are getting evidence-based care in nursing homes. If the feasibility study leads to a main trial that shows Namaste Care does improve their quality of life then there’s potential to look at delivering it in other settings such as people’s own homes.
How will people be able to find out about the results of your study?
Is this study currently open to recruitment? How can people get involved?
We are looking for care homes in the North West of England. Nursing homes that are interested can call 01524 593308, email email@example.com or write to:
International Observatory on End of Life Care
Faculty of Health and Medicine
Division of Health Research
Lancaster University LA1 4YG
*Professor Froggatt, based at Lancaster University, specialises in research into palliative care for older people and its provision in care homes, including those with dementia. She is also interested in public education and awareness approaches around aging and end of life care.