Whole Person, Whole Journey: Developing a Person-Centred Regional Dementia Strategy

Abstract

<jats:title>ABSTRACT</jats:title> <jats:p>We present the development of a regional dementia strategy in Southwestern Ontario, Canada. We worked with stakeholders in a regional health authority to develop a dementia strategy. We conducted interviews with persons with dementia and their care partners <jats:italic>(n =</jats:italic> 26) and health care administrators and policy makers <jats:italic>(n =</jats:italic> 33); and administered a priority-setting survey (<jats:italic>n =</jats:italic> 64). Both participant groups identified provider compassion, professionalism, and care in the early stages of dementia as system strengths. Both groups also highlighted a need for more integration and coordination, a need for more person-centred care, support for care partners, and more flexibility in the provision and receipt of services. The highest-ranked priorities were improving care partner support, improving access to care, and improving system-wide quality. We integrate these strengths, needs, and priorities in a strategic framework, “Whole Person, Whole Journey”. Organizations developing a dementia strategy may use this framework as a springboard for their own work.</jats:p>

The use of formal care for dementia from a professional perspective: a scoping review

“…The remaining fourteen studies [ 6 , 31 – 43 ] included various professions without differentiating between them. Most of these references also included physicians [ 6 , 33 – 35 , 37 , 39 , 40 , 43 ] and various nurses [ 6 , 31 , 32 , 34 , 35 , 37 – 39 , 42 , 43 ].…”

“…Most of the studies did not refer to a theoretical framework [ 6 , 16 – 20 , 22 – 35 , 37 – 39 , 41 , 43 ]. Only four studies [ 21 , 36 , 40 , 42 ] reported to have used a theoretical framework. Haralambous et al [ 36 ] used the Cultural Exchange Model.…”

“…It includes 14 theoretical domains and is intended to categorize applicable psychological theories [ 21 ]. In the qualitative study by Stolee et al [ 40 ], researchers developed a framework they called ‘ Whole Person, Whole Journey ’ to develop a national dementia strategy for the rural area of southwestern Ontario, Canada. This framework is based on the experiences and perspectives of care providers and administrators as well as people with dementia and their family carers with regard to the strengths and gaps in dementia care within the local health care system.…”

“…Several studies described the benefit of a coordinating person (e.g. case manager) or institution that support people with dementia and their informal carers to find timely and appropriate health or social care [ 6 , 16 , 24 , 28 , 29 , 31 , 32 , 35 , 40 ]. Coordination could be performed by different professions such as case managers, geriatricians, general practitioners, dementia advisors, social workers, multidisciplinary teams or by a dementia link support worker [ 29 , 31 ].…”

“…German physicians saw potential for providing support by establishing a professional contact point to which they could turn as healthcare providers in the case of specific issues [ 22 ]. Canadian health care administrators and policy makers recommended a system navigator or a care coordinator role in order to streamline processes [ 40 ].…”