A Qualitative Exploratory Study of Informal Carers’ Experiences of Identifying and Managing Oral Pain and Discomfort in Community-Dwelling Older People Living with Dementia

Abstract

Increased prevalence of dementia and poor oral health in older people is associated with more people living with dementia who experience oral pain and discomfort. However, little is known about how informal carers manage oral pain for people living with dementia in the community. This study aimed to explore informal carers' experiences of identifying and managing oral pain and discomfort in people living with dementia, and barriers and enablers they encountered. Focus groups with informal carers of people living with dementia were conducted, transcribed verbatim, and analysed using thematic analysis. Carers' accounts suggested that day-to-day contact was required to identify oral pain and discomfort, and a symptomology of the signs and symptoms was developed. Carers' accounts also highlighted issues in maintaining oral health, difficulties in accessing the mouth, managing dentures, competing demands, and difficulties in accessing treatment due to health service-, behavioural-and treatment-related barriers. Enablers included informal carers' pivotal role in the identifying and managing oral pain and discomfort in people living with dementia. The study concludes that carers want more partnership work with dental professionals, and clearer care pathways are required to meet the oral health needs of people living with dementia who experience oral pain.

Everyday experiences of people living with dementia and their carers relating to oral health and dental care

“…In the global North, most people now age with some, or all, of their natural teeth. However, there is evidence of a trend of increased caries (tooth decay) among older people (Bedi, 2015;Newton et al, 2018). As with others, people living with a diagnosis of dementia are susceptible to the full range of oral diseases (e.g., caries and periodontal disease).…”

“…In addition to potential barriers to accessing care, prevention of oral disease largely relies on good daily self or assisted care (Chideka et al, 2015;Public Health England, 2017). With increasing numbers of older people with dementia living at home (Newton et al, 2018), many need support with daily practices of oral health care to prevent diseases and maintain oral health (Daly et al, 2017). Maintaining oral health for people with dementia may involve the person (self-care), carers (family or friends) or paid staff (such as agency employed home care workers and directly employed care workers) as well as the professional dental team.…”

“…While there is emerging evidence on the possible association of dementia and oral health (Daly et al, 2017) and oral health challenges (Daly et al, 2017;Delwel et al, 2018;Newton et al, 2018), there is limited literature exploring the day-to-day experiences of dementia and its effects on oral health behaviours and practicesspecifically for those living at home. Moreover, research has mostly been conducted in residential facilities (Paley et al, 2009), yet most people experiencing dementia live in the community.…”

Oral disease burden of dentate older adults living in long-term care facilities: FINORAL study

“…Common oral infectious and inflammatory conditions such as periodontal diseases and caries proceed unnoticed and quietly, and pain is rare or only occurs when the disease is already at an advanced stage [ 6 ]. It is difficult to detect oral discomfort and pain and assess the mouth in frail older adults, especially if they suffer from cognitive decline [ 7 ]. Long-term care residents are practically all frail and immunologically compromised, and a rapid deterioration of remaining teeth because of caries or complete collapse of periodontal support is possible [ 8 ].…”

The Impact of Dementia on Oral Health and Dental Care, Part 1: Setting the Scene for Dental Care Provision

“…Table 2 illustrates the signs that may indicate that a patient may be experiencing oral pain or discomfort and may be used to guide the oral healthcare professional with their history taking. 28,29 Relatives and carers may give insight that facilitates or aids diagnosis, both in terms of their knowledge of the person’s baseline behaviour and in recognising any noticeable changes. Treatment planning will be considered in more detail in the second article in this series, but clearly the immediate focus should be on eliminating pain and its aetiology wherever possible.…”