A team of scientists have been examining how people with dementia and their carers can live well with the disease. The team, from the University of Exeter, have published two papers in Alzheimer Disease & Associated Disorders, one for carers and one for the patients. The studies have been published on a creative commons licence which enables them to be read for free online. The research team hope to help inform support services with responsibility for patients and carers. They also hope to guide policy, enabling resources to be spent to help the 50 million people in the world, who have been diagnosed with dementia, live well.
Dementia is used to describe a set of diseases that include symptoms such as memory loss, difficulties with problem-solving, thinking or language, or changes in mood or behaviour, which get progressively worse. The best known is Alzheimer’s Disease, although there are other forms of the condition. There is no cure for dementia, although some drugs can slow certain types of dementia down. The outward changes in a person’s character is matched by physiological changes in the brain and the symptoms experienced depends on which part of the brain is affected. As dementia progresses, it can make life difficult for the carer, as they need to help the patient more due to loss of independence. They also have to come to terms with their own feelings about the disease which their loved one has. Many dementia patients have other illnesses alongside the disease which can also affect quality of life.
The studies used the IDEAL programme (Improving the experience of Dementia and Enhancing Active LIfe), which includes 1547 people who have been diagnosed with mild to moderate dementia and 1283 carers. The programme is based on surveys and interviews and aims to understand what will make life more difficult or easy for patients with dementia and their carers. For this study, the participants rated their quality of life, satisfaction with life and wellbeing relating it to dementia and overall health. The findings were compiled into one ‘living well’ score for each group.
The scientists found that a wide range of factors helped people to live well. Psychological factors played a big part, including self-esteem, optimism and whether people had experienced depression or loneliness. These were common among both carers and people with dementia. Physical health and fitness also played a big part, as did social interaction and activity. People with dementia rated their ability to manage everyday life activities as integral to enabling them to live well. Carers suggested that whether they felt isolated or trapped had an impact on whether they were living well.
The scientists highlighted how important it was to enable carers and people with dementia to express what they needed, and how it could help inform policy for health trusts globally. The results showed that it was important for people with dementia to find ways to stay optimistic and socially and physically active. Carers needed more networks and for community ties to be strengthened. Improving psychological interventions for both groups could help improve wellbeing, which could help reduce the strain on the health service. Understanding what people need is the first step towards further research. The scientists were confident that further drugs can be found to help people with dementia, but that they need to be able to live well in the meantime.
The Carer’s Paper:
Clare, L., et al., A Comprehensive Model of Factors Associated With Capability to “Live Well” for Family Caregivers of People Living With Mild-to-Moderate Dementia. Alzheimer Disease & Associated Disorders, 2018; 1
The Patients’ Paper:
Clare, l., et al., A Comprehensive Model of Factors Associated With Subjective Perceptions of “Living Well” With Dementia. Alzheimer Disease & Associated Disorders, 2018; 1