Shirley Nurock, a Research Network volunteer, shares her experience of caring for a loved one with agitation, and the latest from the MARQUE research project.
Shirley Nurock, an Alzheimer's Society Research Network volunteer, cared for her husband with young-onset dementia who lived with agitation for many years.
Shirley has been working with Professor Gill Livingston, Consultant Psychiatrist, on the ‘Managing Agitation and Raising Quality of Life’ (MARQUE) research project at University College London.
MARQUE is a 5-year study aimed to gather knowledge and then develop and test ways to improve the quality of life and reduce levels of agitation for people with dementia.
Shirley has worked closely with Gill for over 20 years often as an ‘expert carer’ in many projects she has led.
I know from personal experience the distress that agitation can cause, both to the person with dementia and their families.
Agitation can take many forms: vocalisation, repetitive questions, walking, wandering, disinhibition, aggression, throwing things, violence - all of which can be extremely hard for the carers.
I was at my wits' end trying to find coping strategies to manage the changing expressions of agitation.
My husband, being younger, was still physically active. I would be chasing him round the park terrified of losing him because he seemed unable to sit down or stay still at any point – unlike me!
After several years, coping became increasingly exhausting and, as is often the case, extreme agitation was one of the triggers for admission to a care home.
Findings from the project
The team behind the study developed an intervention for care home staff to help them better cope with people with dementia experiencing agitation.
Following a trial involving 20 care homes, unfortunately, the levels of agitation were not significantly lowered.
However, it did help to improve their quality of life and this wasn't necessarily dependant on increasing the ratio of staff to residents or extra activities.
The more important factors were strategies for staff getting to know residents better and more communication with residents and the research team.
Good staff and their caring skills were most important.
Importantly the team found that agitation when nearing the end of life was dependant on the culture of the care home and how well staff were supported.
Staff felt disempowered when caring for someone who was agitated and needed support to help them care better.
A simple package was developed to improve knowledge and practice for staff and it is being tested for acceptability.
Next steps for the project
The research team will continue to follow the progress of the care homes involved this year and to monitor planned changes.
The researcher will also be evaluating how useful the simple package developed to support care home staff to care for people who experience agitation at the end of life.
Research isn't just for researchers
Your experience of dementia is invaluable to the research community. As part of the project, the research team met with family carers, many of whom were surprised and unprepared for agitation.
However, they came to accept it as part of dementia and used many different flexible strategies to prevent and cope with agitation.
Carers, former carers and people living with dementia have a unique perspective of the condition that is vital to supporting good quality, impactful research. As a Research Network volunteer, there are many opportunities to work alongside leading, dedicated researchers in the field.
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