Developing a carer communication intervention to support personhood and quality of life in dementia

Abstract

Dementia and dementia care present huge and growing challenges, both to individuals and to societies worldwide. In the United Kingdom, the context for the study reported here, recent key policy initiatives have highlighted problems in care provision, noting a lack of appropriate carer guidance, and an overemphasis on strictly biomedical interventions. Communication practices which support agency and empowerment have been identified as areas for particular improvement. A number of communication training and guidance packages are currently available, but these exhibit shortcomings, including a lack of user input and cross-referencing to other communications theory or to relevant empirical evidence ; a lack of individualisation ; and high context-specificity. In general, their uptake and level of application to care is very low. As a response, the study described here developed a new communications intervention characterised by the direct involvement of a broad spectrum of lay and professional stakeholders. This inter-group dialogue produced an agreed free-to-users, user-informed and user-relevant dementia communications toolkit (DEMTEC), which is empirically supported and adaptable to different socio-cultural and care environments. We detail the conceptual background to the toolkit, the inclusive and iterative methodology for its formulation, and how it can be used to help support 'personhood ' and quality of life and to challenge the socially-constructed ' othering ' of people with dementia.

Communication training interventions for family and professional carers of people living with dementia: a systematic review of effectiveness, acceptability and conceptual basis

“…A person-centred care approach places an emphasis upon dynamic attunement, which highlights factors such as the significance of the communicative cues of individuals with dementia and the need to adopt an open approach that enables a person with dementia to take the conversational lead (Kitwood & Bredin, 1992). Yet as noted by Young, Manthorp, Howells, and Tullo (2011), many communication skills training interventions for the carers of people with dementia appear to assume communication is based on keeping speech simple, maintaining eye contact and removing distractions. Gentry (2011) assumed that a person living with dementia knows what they are trying to communicate but are simply struggling with word finding.…”

“…Note 1. Based on previous consultations with key stakeholders, 'family carers' is used for informal carers and 'people living with dementia' for those they are supporting (Farina et al, 2017;Young, Manthorp, Howells, & Tullo, 2011).…”

Factors influencing quality of life of elderly people with dementia and care implications: A systematic review

“…According to the findings of seven studies (Moyle et al, 2011;Woods et al, 2014;Clare et al, 2014b;Nikmat et al, 2015;O'Rourke et al, 2015;Orpwood et al, 2007;and Moyle et al, 2015) it is suggested that higher quality of relationship with family, friends, neighbours and caregivers, either family caregivers or care staff, is associated with increased QoL of elderly people with dementia. In addition, effective communication with their caregivers for elderly people with dementia will enhance their QoL (Young et al, 2011;Orpwood et al, 2007). Social connection with family, community and nature, such as gathering and talking with family, friends, and neighbours (Marventano et al, 2015;Moyle et al, 2015;Moyle et al, 2011;O'Rourke et al, 2015;Castillo et al, 2010;Gräske et al, 2015;Byrne et al, 2006;Orpwood et al, 2007), access to nature (Orpwood et al, 2007), and participation in social activities like organised outside activities (Moyle et al, 2015;Silberfeld et al, 2002;Orpwood et al, 2007), contribute to a higher level of QoL for 23 elderly people with dementia.…”

“…Especially, QoL of residents with dementia could be impaired with depressive mood (Black et al, 2012;Beerens et al, 2014). In addition, effective communication with caregivers is one of the preferred factors influencing the QoL from caregivers' perspectives Young et al, 2011). The last factor is concerned with the characteristics of care institutions.…”

Carers and Empowerment in the UK: A Critical Reflection

“…Official statistics indicate that a very small proportion of carers (6 per cent) received assessments of their own needs in 2009/10 and that only 66 per cent of all those assessed received a service (Department of Health, 2010a;Niblett, 2011). Whilst information may have some potential to empower, when offered in a context constrained by resource limitations and unconnected to wider sources of empowerment, such as enhancement of carers' rights, its capacity to do so is severely limited (Matka et al, 2010;Young et al, 2011). Traditional practice tends to focus on providing information.…”