Die erfahrene Demenzforscherin Anthea Innes fasst in diesem Forschungshandbuch den Gegenstand der Demenzevaluation zusammen. Sie zeigt, wie, in welchem Kontext, mit welchen Instrumenten diese erfolgt und mit welchen aktuellen und zukünftigen Aufgaben und Problemen Forschende und Praktiker bei der Bewertung der Versorgung von Menschen mit Demenz konfrontiert sind.
Wie können Pflege-, Sozial- und Gesundheitswissenschaftler die Versorgung und das Erleben von Menschen mit Demenz erforschen? Kritiker einer primär medizinisch orientierten Demenzforschung fordern schon lange eine stärker sozial-, pflege- und gesundheitswissenschaftlich orientierte Erforschung des Phänomens "Demenz". Anthea Innes fasst die Forschungsansätze zum Verstehen von Demenz und die wichtigsten Prinzipien und Vorstellungen von Betreuung und Pflege zusammen. Sie erläutert deren sozialen, historischen, kulturellen und politischen Kontext. Sie kritisiert die positivistischen Ansätze und Main-Stream-Paradigma und zeigt, wie sozial-, pflegewissenschaftliche und versorgungsforscherische Demenzforschung ausgeführt werden kann, die soziale, kulturelle und ökonomische Kontexte berücksichtigt.
Purpose The perspectives of people with dementia and their care partners regarding "extra care" housing are currently unknown. The purpose of this paper is to report findings of a consultation study exploring the perceived barriers and facilitators of a relocation to extra care housing, from the perspective of people living with dementia, and their care partners.
Design/methodology/approach Fieldwork consisted of paired or 1-1 interviews and small focus groups with potential users of an alternative model of extra care support for people living with dementia in the South of England. The consultation took place between June and August 2013. The interviews and focus groups were audio recorded, transcribed verbatim. The transcripts were analysed thematically.
Findings Benefits of extra care were identified as the opportunity for couples to remain living together for longer, creating a supportive, dementia-friendly community, and a reduction in the strain experienced by the care partners. Barriers centred on a sense of loss, stress and uncertainty. Living and caring at home was perceived as preferable to shared care.
Research limitations/implications The findings presented here have limited generalisability for two reasons. First, the shared care approach consulted on was very specific. Second, the participants form a purposive sample and as such are not representative of a wider population. Despite best intentions, the voice of people with dementia, are underreported in this consultation. Only one person with early on-set dementia was interviewed and the remaining two people with dementia were interviewed alongside their care partner.
Practical implications The findings cast doubt on the viability of extra care facilities, designed for couples living with dementia, if extra care continues to be conceptualised and marketed as a preventative lifestyle choice. The findings indicate the value of consulting with people with dementia, and their care partners, when designing new forms of housing with care specifically for people living with dementia.
Social implications The findings of this consultation exemplify the wish of couples living with dementia to remain together, in what they perceive to be "home", for as long as possible. Couples living with dementia are therefore unlikely to wish to move into an extra care facility as a lifestyle choice option, early into their journey with dementia. This raises questions about the suitability of extra care, as a form of housing with care, for couples living with dementia.
Originality/value This paper contributes to the body of literature, exploring the feasibility of new and innovative alternative care and housing options, for people with dementia. This paper is one of the first to explore extra care as a housing and social care option for couples with dementia.
Ensuring that environments are designed to cater for those with decreasing orientation, perceptual and mobility skills, is an example of how environments are being changed to become more age and dementia friendly. However, environmental design should directly involve potential users of the environment to ensure that their views are accounted for. Four open-ended questions, focusing on orientation strategies, reasons for disorientation, and design preferences, were given to 32 older adults after they had completed a route learning task through an unfamiliar environment. A Content Analysis found a strong focus on participants' ability to memorize routes based on verbally encoding the route and on their ability to remember landmarks, with the reports linking closely to cognitive theories of navigation. Design suggestions included the importance of a homely and welcoming environment, memorable features, and access to the outdoors. The findings can be used inform age and dementia friendly design principles.
Informal care partners of individuals with dementia are often referred to as the 'invisible patient', whose needs are under-represented in research. The physical, mental and emotional responsibilities of caring for someone with dementia can be both rewarding and challenging. This qualitative study explored how attending a dementia cafe affected care partner well-being. The co-designed cafe adopted a person-centred approach, valuing members' unique abilities and contributions. Results showed that the cafe provided a safe environment where individuals could be themselves. Participants found a sense of belonging, camaraderie and friendship that enhanced their sense of well-being and maintained their selfhood and dignity.
