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Better Life for People with Dementia Found in Key Factors

"... vital that we understand how we can optimize quality of life for the 50 million people worldwide who have dementia"

May 9, 2018 - Good relationships, social engagement, better daily functioning, good physical and mental health, and high-quality care were all linked to better quality of life for people with dementia by a study published in Psychological Medicine.

"This research supports the identification of national priorities for supporting people to live as well as possible with dementia, according to Professor Linda Clare, at the University of Exeter that led the study.

"While many investigations focus on prevention and better treatments, it's equally vital that we understand how we can optimize quality of life for the 50 million people worldwide who have dementia. We now need to develop ways to put these findings into action to make a difference to people's lives by supporting relationships, social engagement and everyday functioning, addressing poor physical and mental health, and ensuring high-quality care."

The research was supported jointly by the Economic and Social Research Council (ESRC) and the National for Health Research (NIHR). It involved collaboration with the London School of Economics, the universities of Sussex, Bangor, Cardiff, Brunel and New South Wales in Australia, and Kings College London.

The team carried out a systematic review and meta-analysis to examine all available evidence about the factors that are associated with quality of life for people with dementia. They included 198 studies, which incorporated data from more than 37,000 people.

The study found that demographic factors such as gender, education marital status, income or age were not associated with quality of life in people with dementia. Neither was the type of dementia.

Factors that are linked with poor quality of life include poor mental or physical health, difficulties such as agitation or apathy, and unmet needs.

Factors that are linked with better QoL include having good relationships with family and friends, being included and involved in social activities, being able to manage everyday activities, and having religious beliefs.

Many other factors showed small but statistically significant associations with quality of life. This suggests that the way in which people evaluate their quality of life is related to many aspects of their lives, each of which have a modest influence. It is likely that to some extent the aspects that are most important may be different for each person.

Evidence from longitudinal studies about what predicts whether or not someone will experience a good quality of life at later stages was limited. The best indicator was the person's initial rating of quality of life. This again highlights the importance of optimising quality of life from the earliest stages of living with dementia.

Dr Anthony Martyr, lead author on the study, from the University of Exeter, said: "While in general it is more of a challenge to maintain good quality of life as dementia progresses, we found little evidence to show what predicts whether quality of life will improve or decline over time. The IDEAL programme we are currently leading will follow people living with dementia over several years and will help to answer this question."

Dr Doug Brown, Chief Policy and Research Officer at Alzheimer's Society, said: "Maintaining a healthy social life and doing things you enjoy is important for everyone's quality of life. As this Alzheimer's Society funded study highlights, people living with dementia are no exception.

"Someone develops dementia every three minutes but too many are facing it alone and feel socially isolated- a factor that researchers pinpoint contributing to a lower quality of life.

"People with dementia have a right to continue living a life they love. Alzheimer's Society's Dementia Friendly Communities initiative enables individuals, businesses and communities to involve and empower people affected - but we need all of society to unite to ensure people with dementia feel understood, valued and able to contribute to their community."

The full paper, entitled 'Living well with dementia: a systematic review and correlational meta-analysis of factors associated with quality of life, well-being and life satisfaction in people with dementia', is published in Psychological Medicine. Authors are Anthony Martyr, Sharon M. Nelis, Catherine Quinn, Yu-Tzu Wu, Ruth A. Lamont, Catherine Henderson, Rachel Clarke, John V. Hindle, Jeanette M. Thom, Ian Rees Jones, Robin G. Morris, Jennifer M. Rusted, Christina R. Victor and Linda Clare.

The study stems from the IDEAL programme. IDEAL is a major longitudinal cohort study of 1550 people with dementia and their family members or friends funded by the Economic and Social Research Council and the National Institute for Health Research. The IDEAL study is survey- and interview-based and aims to understand what makes it easier or more difficult for people to live well with dementia.

The findings from the study will help to identify what can be done by individuals, communities, health and social care practitioners, care providers and policy-makers to improve the likelihood of living well with dementia. Since 2018 the project has been extended as an Alzheimer's Society Centre of Excellence, making it possible to follow the experiences of participants for several more years.

For more information, visit http://www.idealproject.org.uk/ or follow @IDEALStudyTweet on Twitter.

"Since symptoms of depression can be treated, it may be possible that treatment may also reduce thinking and memory problems," said study author Adina Zeki Al Hazzouri, PhD, MS, of the University of Miami Miller School of Medicine in Florida.

"With as many as 25 percent of older adults experiencing symptoms of depression, it's important to better understand the relationship between depression and memory problems."

The study involved 1,111 people who were all stroke-free with an average age of 71. The majority were Caribbean Hispanic.

At the beginning of the study, all had brain scans, a psychological exam and assessments for memory and thinking skills. Their memory and thinking skills were tested again an average of five years later.

At the start of the study, 22 percent of participants had greater symptoms of depression. This was defined as a score of 16 or higher on a test with a range of 0-60, which is considered at risk for clinical depression. For the test, participants reported how often in the past week they agreed with statements such as "I was bothered by things that usually don't bother me" and "I did not feel like eating."

Researchers found after adjusting for age, race, anti-depressive medications, and other variables, greater symptoms of depression were linked to worse episodic memory. Scores on tests were lower by 0.21 of a standard deviation compared to those without greater symptoms of depression. Episodic memory is a person's ability to remember specific experiences and events.

Researchers also found those with greater symptoms of depression had differences in the brain including smaller brain volume as well as a 55 percent greater chance of small vascular lesions in the brain.

Researchers found no evidence of a relationship between greater symptoms of depression and changes in thinking skills over five years.

"Small vascular lesions in the brain are markers of small vessel disease, a condition in which the walls in the small blood vessels are damaged," said Zeki Al Hazzouri.

"Our research suggests that depression and brain aging may occur simultaneously, and greater symptoms of depression may affect brain health through small vessel disease."

Zeki Al Hazzouri noted that the study provides information about depression and memory and thinking skills, especially among people who identified as Hispanic, who have been insufficiently studied in previous studies on the topic, even though they can be at increased risk of dementia in late life.

Limitations of the study include that participants had to be healthy enough to have an MRI, so they may have been healthier than the general population. Also, the study was over a five-year period, which may not have been long enough to capture meaningful changes in thinking and memory abilities over time.

Notes

The study was published in the May 9, 2018, online issue of Neurology, the medical journal of the American Academy of Neurology. It was supported by the National Institutes of Health, the American Heart Association and the Evelyn F. McKnight Brain Institute.

Learn more about the brain at http://www.BrainandLife.org, the American Academy of Neurology's patient and caregiver website and online home of Brain & LifeTM, a free magazine focused on the intersection of neurologic disease and brain health.

The American Academy of Neurology is the world's largest association of neurologists and neuroscience professionals, with over 34,000 members. The AAN is dedicated to promoting the highest quality patient-centered neurologic care. A neurologist is a doctor with specialized training in diagnosing, treating and managing disorders of the brain and nervous system such as Alzheimer's disease, stroke, migraine, multiple sclerosis, concussion, Parkinson's disease and epilepsy.

For more information about the American Academy of Neurology, visit http://www.aan.com or find us on Facebook, Twitter, Google+, LinkedIn and YouTube.

 

 

 

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