BACKGROUND: Consensus recommends early recognition of memory problems through multi-disciplinary assessment in memory clinics; however, little is known about the experiences of people accessing such services. The aim of this review was to synthesis empirical evidence on patient and carer experiences in the transition to dementia. METHODS: This review updates an earlier review (Bamford et al., 2004) on the topic of disclosure of the diagnosis of dementia. Key electronic databases were searched including OVID Medline, CINAHL, Web of Science, EMBASE, and Sociological Abstracts; this was supplemented by hand searching of reference lists and contact with experts in the field. Only papers published after 2003 were included. RESULTS: Of the 35 papers included in the review, only one study observed the process of disclosure and only two papers explored the effects on the person with dementia's health. The vast majority of people with dementia wished to know their diagnosis. The key challenges for the person with dementia were coming to terms with losses on multiple levels. Although there may be short-term distress, the majority of people with dementia do not appear to experience long-term negative effects on their psychological health. For family carers, becoming the main decision-maker and adjusting to increased responsibility were common concerns. CONCLUSIONS: There is still little empirical research observing the process of diagnostic disclosure in dementia. Studies exploring the views of patients and their families suggest this should be an ongoing process with the provision of support and information tailored to individual needs. The term "Alzheimer's disease" appears to have more negative connotations than the word "dementia".
BACKGROUND: Consensus recommends early recognition of memory problems through multi-disciplinary assessment in memory clinics; however, little is known about the experiences of people accessing such services. The aim of this review was to synthesis empirical evidence on patient and carer experiences in the transition to dementia. METHODS: This review updates an earlier review (Bamford et al., 2004) on the topic of disclosure of the diagnosis of dementia. Key electronic databases were searched including OVID Medline, CINAHL, Web of Science, EMBASE, and Sociological Abstracts; this was supplemented by hand searching of reference lists and contact with experts in the field. Only papers published after 2003 were included. RESULTS: Of the 35 papers included in the review, only one study observed the process of disclosure and only two papers explored the effects on the person with dementia's health. The vast majority of people with dementia wished to know their diagnosis. The key challenges for the person with dementia were coming to terms with losses on multiple levels. Although there may be short-term distress, the majority of people with dementia do not appear to experience long-term negative effects on their psychological health. For family carers, becoming the main decision-maker and adjusting to increased responsibility were common concerns. CONCLUSIONS: There is still little empirical research observing the process of diagnostic disclosure in dementia. Studies exploring the views of patients and their families suggest this should be an ongoing process with the provision of support and information tailored to individual needs. The term "Alzheimer's disease" appears to have more negative connotations than the word "dementia".
Authors: Ola M Farag; Reham M Abd-Elsalam; Hanan A Ogaly; Sara E Ali; Shymaa A El Badawy; Muhammed A Alsherbiny; Chun Guang Li; Kawkab A Ahmed Journal: Neurochem Res Date: 2021-01-13 Impact factor: 3.996
Authors: Piotr Lewczuk; Peter Riederer; Sid E O'Bryant; Marcel M Verbeek; Bruno Dubois; Pieter Jelle Visser; Kurt A Jellinger; Sebastiaan Engelborghs; Alfredo Ramirez; Lucilla Parnetti; Clifford R Jack; Charlotte E Teunissen; Harald Hampel; Alberto Lleó; Frank Jessen; Lidia Glodzik; Mony J de Leon; Anne M Fagan; José Luis Molinuevo; Willemijn J Jansen; Bengt Winblad; Leslie M Shaw; Ulf Andreasson; Markus Otto; Brit Mollenhauer; Jens Wiltfang; Martin R Turner; Inga Zerr; Ron Handels; Alexander G Thompson; Gunilla Johansson; Natalia Ermann; John Q Trojanowski; Ilker Karaca; Holger Wagner; Patrick Oeckl; Linda van Waalwijk van Doorn; Maria Bjerke; Dimitrios Kapogiannis; H Bea Kuiperij; Lucia Farotti; Yi Li; Brian A Gordon; Stéphane Epelbaum; Stephanie J B Vos; Catharina J M Klijn; William E Van Nostrand; Carolina Minguillon; Matthias Schmitz; Carla Gallo; Andrea Lopez Mato; Florence Thibaut; Simone Lista; Daniel Alcolea; Henrik Zetterberg; Kaj Blennow; Johannes Kornhuber Journal: World J Biol Psychiatry Date: 2017-10-27 Impact factor: 4.132
Authors: Pim van den Dungen; Eric P Moll van Charante; Peter M van de Ven; Gerbrand Foppes; Jos P C M van Campen; Harm W J van Marwijk; Henriëtte E van der Horst; Hein P J van Hout Journal: BMC Geriatr Date: 2015-08-27 Impact factor: 3.921
Authors: Jill Manthorpe; Kritika Samsi; Sarah Campbell; Clare Abley; John Keady; John Bond; Sue Watts; Louise Robinson; James Warner; Steve Iliffe Journal: Br J Gen Pract Date: 2013-01 Impact factor: 5.386
Authors: Frances Bunn; Claire Goodman; Katie Sworn; Greta Rait; Carol Brayne; Louise Robinson; Elaine McNeilly; Steve Iliffe Journal: PLoS Med Date: 2012-10-30 Impact factor: 11.069
Authors: Pim van den Dungen; Eric P Moll van Charante; Harm W J van Marwijk; Henriëtte E van der Horst; Peter M van de Ven; Hein P J van Hout Journal: BMC Public Health Date: 2012-08-04 Impact factor: 3.295