How you can support people to live well with dementia

An accumulation of small lifestyle factors can make a big difference in quality of life for people with dementia. On World Alzheimer’s Day, Dr Anthony Martyr, from the University of Exeter, summarises the evidence on how you can best support friends or loved ones.

It is estimated that more than 850,000 people in the UK have dementia, a number set to increase to 2 million by 2051. This year alone, 225,000 people will develop dementia – that’s one every three minutes. It’s therefore critical that our research efforts don’t focus exclusively on finding a cure. Even if it could be identified now, any treatment would only be likely to benefit people currently in mid life.

Dementia is now the most feared condition in the UK, but it is possible to optimise quality of life and support people to live as well as possible. Many people don’t know how to react when they hear an acquaintance or loved one has dementia.  I hope my research helps give people confidence to try ways to support those with dementia, as well as informing policy.

As part of the University of Exeter-led IDEAL study, a large-scale approach to identifying which factors can support people to live as well as possible with dementia, I recently led a review of all the available evidence in the field. It involved the four year task of analysing 198 studies worldwide, encompassing information on nearly 38,000 people with dementia.

Amid this mound of data, one of the key factors that emerged as making a real difference was how socially active people were. Too often older people can be socially isolated, and we know this contributes to dementia risk. Maintaining social activity and being included and involved in social activities were both lined to better quality of life.

Family, friends and neighbours can all contribute here, and many organisations run excellent initiatives such as memory cafes and day centres to meet this need. One arm of the IDEAL study is the A Life More Ordinary project where, photographer Ian Beesley, cartoonist Tony Husband and poet Ian McMillan worked with people with dementia who were involved in Age UK Exeter’s Budding Friends allotment group. The group itself is an outstanding example of social interaction with real purpose, and the artists’ project saw them produce works that will be on display outside Mothercare in Exeter’s Guildhall Shopping Centre today.

People with dementia also valued being able to manage everyday activities. The GREAT Trial, which along with the IDEAL study is led by Professor Linda Clare at the University of Exeter, recently found that an approach called cognitive rehabilitation therapy can help people with early stage dementia significantly improve their ability to engage in important everyday activities and tasks.

It involves working together to establish personalised everyday goals, which could range from cooking food without burning it to successfully going to the shops or remembering neighbours’ names. Therapists worked with family carers and people with dementia to establish ways to meet the goals that suited people’s individual needs and abilities.

Good relationships with friends and family was another key element to higher quality of life. Interestingly, certain factors that can be seen as “life goals” had no bearing on differences in people’s quality of life – particularly education level, marital status and income.

We also identified factors that were linked to poorer quality of life. People with dementia who had poor mental or physical health, who had unmet needs, who experienced pain, or whose carer experienced low well-being were more likely to have poor quality of life. We also found that quality of care and support was important. For instance, where a person with dementia is supported by a family member, quality of life is better where the family member feels more positive and better able to cope. Professor Clive Ballard, at the University of Exeter, has led studies concluding that people with dementia in residential care, receiving specialist person-centred care, which involves the individual in their own care plan, is linked to better quality of life, when combined with just ten minutes a day of social interaction. The average amount of social interaction in care homes is as low as two minutes a day, so even a brief daily visit could increase a resident’s quality of life.

Unsurprisingly, our findings did not identify a “silver bullet” for supporting people to optimise their quality of life. As individual as we all are throughout our lives, so are our preferences on how we want to live in older age. However, our research did identify that a number of factors can combine in small ways to make a real difference to the extent to which people enjoy their lives. I hope this encourages people that making their own small difference can contribute to a real overall benefit.  This could be through engaging someone in conversation or an activity they enjoy like a jigsaw, perusing a photo album or some gentle gardening. The key factor is taking the time and care to ensure that it is individualised to what the person enjoys in life.

To find out more about dementia research at Exeter, visit http://www.exeter.ac.uk/dementia/ or follow #ExeterDementia on Twitter.

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