Respect for the person with dementia: fostering greater user involvement in service planning

Abstract

2 Abstract:Respect for people with dementia and their involvement in service planning is explored, based on selected research publications and policy papers, mainly from the Department of Health and the Alzheimer's Society. This article supports the inclusion of people with dementia care in service planning as part of person-centred care. Necessary adjustments to research methods and ethics committee procedures for gaining informed consent are discussed, as is the importance of ethical policy formation and implementation, in order to achieve person-centred care. This will ensure a high degree of active involvement by people with dementia, enhancing self respect and responding to the needs of this often marginalised population. describe an inclusive approach to dementia care planning and delivery. In a joint study by Dementia North and Northumbria University, the research team produced a guide 'to explore how people with dementia can be involved in service planning and development' (p. 3). At an international level, the Dementia Advocacy and Support Network International (DASNI) has provided a forum for involving people with dementia in service planning and implementation, which will be discussed below (http://www.dasninertnational.org).Available evidence, suggesting ways of empowering users to participate in policy formation around services they access, selected research publications and reports from government and voluntary bodies will be examined in this article. The main focus is on the planning of broad systems of services. Personhood and dignity of people with dementia, and promotion of person-centred care.Personhood is central to demand for respect from society and the root of human dignity. Batson et. al.(1994) In the next section we discuss adjustments to research methods and the work of ethics committees, needed to achieve maximum involvement in service planning by clients as part of person-centred care. Adjustments of research methods and ethics committee proceduresBryan and Maxim (2006)  Promote respect and dignity for persons with dementia. Provide a forum for the exchange of information.

‘Like a prison without bars’

“…Some research concludes that to enhance the dignity of persons with dementia, a ‘person-centred’ approach is acquired. 22 –26 The term ‘person-centred care’ builds on Tom Kitwood’s 27 theory on how to see the person as being an expert on himself or herself and seeing the person as an individual with subjective lived experiences. The term is used in many different ways and may be seen both as a care approach and a set of techniques in work with persons with dementia.…”

Involving people with dementia in the work of an organisation: Service User Review Panels

“…Haak (2002) suggests that people with dementia can communicate better with people who take time to get to know them and make them feel at ease. Lorentzon and Bryan (2007) highlight the need for facilitators to use short sentences, address the person by name, use appropriate pauses and repetition, and to use keyword stresses and memory reminders. Powell (2000) argues that allowances should be made for expression of ''wrong'' ideas and words.…”

“…Widely acknowledged specificities that need to be considered when involving people with dementia concern their cognitive and communication abilities (Lorentzon and Bryan, 2007). Existing good practice guidelines suggest that facilitators of participatory initiatives need to be aware of the power relations between service users and professionals, value the knowledge and expertise of people who use services, and ensure that service users are comfortable with the form of communication (Social Care Institute for Excellence, 2006).…”

Active inclusion of people living with dementia in planning for dementia care and services in low- and middle-income countries

“…Ensuring dementia care services are designed by, rather than simply for, people living with dementia is being increasingly supported by both service users and producers. The drive to involve dementia service users in service design and planning has become more common in high-income countries (HICs) (Hanson et al, 2007;Leorin, Stella, Nugent, Cleland, & Paggetti, 2019;Lorentzon & Bryan, 2007;McIntyre, 2003;Penrod et al, 2007;Read, Toye, & Wynaden, 2020). However, it is rare in lowand middle-income countries (LMICs), where two-thirds of the world's people with dementia live (Prince, 2015).…”