Dementia, Dr Catherine Quinn, Health, Wellbeing & Social Care

What’s in a name? How family carers understand dementia

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The ‘Prime Minister’s challenge on dementia 2020’ focuses on the need to improve the public’s awareness of dementia; one common misconception about dementia is that it is a normal part of ageing. Another area identified in the report is the need to improve diagnosis rates, with current figures indicating that only 59% of those estimated to have dementia have received a diagnosis.

With an increasing focus on a ‘timely’ diagnosis in people with dementia there has been an emphasis on improving diagnostic rates through improving health services, increasing referrals and shortening the length of time people have to wait for a diagnosis. However, for a diagnosis to take place this relies on the person experiencing symptoms to recognise there is something wrong and to seek medical advice. In dementia this can be challenging because the person may be unaware anything is wrong or may normalise the symptoms she/he is experiencing and be unwilling to seek help.

The symptoms of dementia tend to occur very gradually. Family members can often be the first to notice the symptoms in their relative, picking up on signs such as memory problems. How family members understand and interpret the behaviour they are observing could have an influence on how they respond to the person and cope with these changes.

A recent study published in the Journal of Ageing and Mental Health explored family carers’ understandings of their relative’s condition. They study focused on four key areas:

  • How do they refer to the condition their relative/friend has?
  • What do they think caused this condition?
  • What can be done about this condition? Are there any kinds of treatment (e.g. medication) that could help? Are there things that people can do to help themselves?
  • How do they think this condition will progress over time?

Interviews with family carers of people who had received a diagnosis of dementia were analysed. The findings indicate that majority of carers used a diagnostic/medical term to refer to their relative’s condition, such as Alzheimer’s or vascular dementia. However, a small number of carers used more descriptive terms, for instance ‘memory loss’. There could be differences between the terms the carers used to describe the condition and the terms they used when talking with the person with dementia. This could be to prevent confusion, or as a way of protecting the person as some were concerned that using diagnostic terms would cause distress.

Carers identified many different causes of dementia, with the majority talking about dementia having a biological cause. Some linked it to something going wrong in the person’s brain or vascular problems. Alternative causes suggested were ageing, lifestyle, environment, life events and hereditary factors.

When carers were asked about how dementia could be managed they spoke personal management techniques such as diaries and calendars, although others felt that nothing could be done. In terms of medication, just under half of carers believed that medication for memory difficulties could have a positive impact. The others were uncertain about the benefits of medication. For many carers it was unclear as to how their relative’s dementia would progress over time. Some hoped that the condition would improve or remain stable, whilst others felt that their relative’s condition would deteriorate.

The findings indicate that carers’ beliefs were being influenced by information provided by healthcare professionals; thus, they are a valuable source of information for carers. This suggests that healthcare professionals working with carers should explore carers underlying beliefs about dementia when providing them with information.

The findings indicate that carers need further information about the causes of dementia and techniques for its management. However, this study also raises the question of how important is it for carers to have accurate beliefs about dementia. For instance, the term the carer uses to describe the condition may be less important as long as they recognise that person with dementia has a condition that impacts, for instance, on their memory.

The next step is to explore how carers’ beliefs influence their well-being and their ability to cope with caring. These issues are currently being explored in the IDEAL study.


About the author: Dr Catherine Quinn is a member of the Centre for Research in Ageing and Cognitive Health (REACH). Catherine is a Senior Research Fellow working on the IDEAL study, which is a five-year longitudinal cohort study of the experiences of 1500 people with dementia and their primary caregivers throughout the UK.

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