Abstract

Little is known about how community-dwelling people with dementia, as well as their carers, look after their oral health and use dental care. This exploratory study aimed to explore the beliefs, experiences and practices about oral health of people living with dementia and their carers. We used an ethnographic qualitative approach conducting face-to-face interviews at home with people living with dementia and/or carers. Interview data and field notes were analysed thematically using framework methods. We approached volunteers registered with the online UK. Join Dementia Research network from whom a total of 17 participants were recruited in 2018. Five interviews were conducted with carers alone, two with a person living with dementia alone, and five with a carer and person with dementia jointly. Three main themes emerged: oral health is not prioritised; access to dental care is shaped by increasing disability; and the importance of continuity of care. While people living with dementia and their carers may view oral health important once prompted, many reported difficulties in undertaking or assisting with daily self-care and accessing dental services, particularly as dementia progresses. We draw out implications for the organisation and delivery of public and private dental services.

Highlights

  • The number of people with dementia is increasing globally and predicted to double every 20 years (Alzheimer’s Disease International, 2019)

  • 1. to explore the oral health beliefs, experiences and practices of people living with dementia and their carers; 2. to better understand the impact dementia has, over time, upon oral health and oral care practices, as well as engagement with dental services; and

  • Five interviews were held with a carer alone (P1-5), two with a person living with dementia alone (P1-2) and five jointly with a person living with dementia and their carer (P3-7)

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Summary

Introduction

The number of people with dementia is increasing globally and predicted to double every 20 years (Alzheimer’s Disease International, 2019). Many countries in the global North have a national dementia strategy, with England’s strategy accompanied by a prime ministerial challenge to improve support (GOV.UK, 2020). Legislation, such as the Care Act 2014 and Mental Capacity Act 2005 (covering England and Wales), provide a framework for dementia care. Dementia is characterised by progressive cognitive decline with symptoms that fluctuate in intensity and manifestation (Rockwood et al, 2009). This variability and unpredictability add further challenges to daily, self, assisted and paid personal care. As with other long-term conditions, dementia affects the lives of both the person with dementia and their family, friends and carers (NHS England, 2020) and can impact on oral health and dental care (Bedi, 2015)

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