OBJECTIVES: Including the perspectives of persons with dementia (PwD) is essential in order to organize care structures for them. With this systematic review, we set out to screen the existing scientific evidence on self-expressions of community-dwelling individuals with dementia in order to provide a research base for developing an intervention for persons in early stages of the disease. The leading research questions for this review are: What needs do PwD living at home express? What are their subjective demands? What do they do to cope with their situation? METHODS: We performed a systematic literature review of review publications on subjective experiences of PwD. The publications were analysed using MAXQDA 10 to perform a thematic analysis. RESULTS: We identified 41 relevant reviews, of which 6 met our inclusion criteria. PwD experience the whole range of human emotions. Their needs and demands do not differ significantly from those of other groups of patients with chronic conditions. Coming to terms with the disease and maintaining normality appeared to be major themes. With regard to expectations from the side of professional health care, the need for accompanying, continuous support and counselling appeared to be central. Furthermore, disclosure of diagnosis represents a critical stage for PwD, but our findings indicated that they prefer to be included in this process. CONCLUSIONS: PwD are well able to express their needs. They should be included in research since they can provide valuable findings. Furthermore, those findings should be implemented in applied dementia care.
OBJECTIVES: Including the perspectives of persons with dementia (PwD) is essential in order to organize care structures for them. With this systematic review, we set out to screen the existing scientific evidence on self-expressions of community-dwelling individuals with dementia in order to provide a research base for developing an intervention for persons in early stages of the disease. The leading research questions for this review are: What needs do PwD living at home express? What are their subjective demands? What do they do to cope with their situation? METHODS: We performed a systematic literature review of review publications on subjective experiences of PwD. The publications were analysed using MAXQDA 10 to perform a thematic analysis. RESULTS: We identified 41 relevant reviews, of which 6 met our inclusion criteria. PwD experience the whole range of human emotions. Their needs and demands do not differ significantly from those of other groups of patients with chronic conditions. Coming to terms with the disease and maintaining normality appeared to be major themes. With regard to expectations from the side of professional health care, the need for accompanying, continuous support and counselling appeared to be central. Furthermore, disclosure of diagnosis represents a critical stage for PwD, but our findings indicated that they prefer to be included in this process. CONCLUSIONS: PwD are well able to express their needs. They should be included in research since they can provide valuable findings. Furthermore, those findings should be implemented in applied dementia care.
Authors: Milena von Kutzleben; Kerstin Köhler; Jan Dreyer; Bernhard Holle; Martina Roes Journal: Z Gerontol Geriatr Date: 2015-12-22 Impact factor: 1.281
Authors: Rebecca Gathercole; Rosie Bradley; Emma Harper; Lucy Davies; Lynn Pank; Natalie Lam; Anna Davies; Emma Talbot; Emma Hooper; Rachel Winson; Bethany Scutt; Victoria Ordonez Montano; Samantha Nunn; Grace Lavelle; Matthew Lariviere; Shashivadan Hirani; Stefano Brini; Andrew Bateman; Peter Bentham; Alistair Burns; Barbara Dunk; Kirsty Forsyth; Chris Fox; Catherine Henderson; Martin Knapp; Iracema Leroi; Stanton Newman; John O'Brien; Fiona Poland; John Woolham; Richard Gray; Robert Howard Journal: Health Technol Assess Date: 2021-03 Impact factor: 4.014