{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,17]],"date-time":"2026-07-17T16:12:49Z","timestamp":1784304769533,"version":"3.55.0"},"reference-count":27,"publisher":"Wiley","issue":"21-22","license":[{"start":{"date-parts":[[2013,3,13]],"date-time":"2013-03-13T00:00:00Z","timestamp":1363132800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Journal of Clinical Nursing"],"published-print":{"date-parts":[[2013,11]]},"abstract":"<jats:sec><jats:title>Aims and objectives<\/jats:title><jats:p>To examine the experiences of relatives of a spouse or parent who suffers from dementia and examines whether there are similarities or differences between these experiences.<\/jats:p><\/jats:sec><jats:sec><jats:title>Background<\/jats:title><jats:p>Dementia is an increasing illness in the world. Dementia affects not only the person with dementia but also the relatives. There is a lack of knowledge about the experience of being a relative to a dementia\u2010suffering person.<\/jats:p><\/jats:sec><jats:sec><jats:title>Design and methods<\/jats:title><jats:p>Twenty\u2010one stories from relatives were included in this study, and these stories were analysed by employing Kirsti Malterud's method \u2018systematic text condensation\u2019. The relatives were divided into four groups: sons, husbands, daughters and wives.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Eight themes were identified in their stories, two in each of the four groups. From these eight themes, it was identified that they all experienced change, grief and negative personal sentiments. However, differences were also found, one of them being that the sons found it easier to adapt to new roles during the course of the illness, while the daughters found it more difficult. The husbands experienced being attacked by the people around them, while the wives were found to submit their dementia\u2010suffering husbands to physical abuse. The wives also suffered from self\u2010criticism.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>The similarities between the four groups are more significant than the differences. Sons, husbands, daughters and wives of a person suffering from dementia should be considered on an equal basis in terms of their experiences of grief, change and personal negative sentiments.<\/jats:p><\/jats:sec><jats:sec><jats:title>Relevance to clinical practice<\/jats:title><jats:p>Relatives play a significant role in the well\u2010being of their parent or spouse suffering from dementia. Therefore, professionals need to focus on both relatives and patient when they meet a person with dementia in clinical practice.<\/jats:p><\/jats:sec>","DOI":"10.1111\/jocn.12131","type":"journal-article","created":{"date-parts":[[2013,3,14]],"date-time":"2013-03-14T08:27:17Z","timestamp":1363249637000},"page":"3024-3031","source":"Crossref","is-referenced-by-count":20,"title":["\u2018The path through the unknown\u2019: the experience of being a relative of a dementia\u2010suffering spouse or parent"],"prefix":"10.1111","volume":"22","author":[{"given":"Rikke","family":"Madsen","sequence":"first","affiliation":[{"name":"Institute of Public Health Aarhus University Aarhus Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Regner","family":"Birkelund","sequence":"additional","affiliation":[{"name":"Institute of Public Health Aarhus University Aarhus Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2013,3,13]]},"reference":[{"key":"e_1_2_8_2_1","unstructured":"Alzheimer's Disease International (ADI)(2009)World Alzheimer Report 2010.ADI London."},{"key":"e_1_2_8_3_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1471-6712.2005.00328.x"},{"key":"e_1_2_8_4_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2702.2007.02066.x"},{"key":"e_1_2_8_5_1","doi-asserted-by":"publisher","DOI":"10.1093\/geronb\/56.3.S129"},{"key":"e_1_2_8_6_1","unstructured":"Board of Service (Servicestyrelsen)(2007a)Cohabiting with Dementia. A Questionnaire about Daily Life with a Demented.Board of Service (Servicestyrelsen) Odense."},{"key":"e_1_2_8_7_1","unstructured":"Board of Service (Servicestyrelsen)(2007b)Relatives to a Demented. A Questionnaire about their Health and Needs.Board of Service (Servicestyrelsen) Odense."},{"key":"e_1_2_8_8_1","unstructured":"Board of Service (Servicestyrelsen)(2007c)Cohabiting with Dementia. An Analysis of Eight Interviews about Daily Life with a Demented.Board of Service (Servicestyrelsen) Odense."},{"key":"e_1_2_8_9_1","unstructured":"Board of Service (Servicestyrelsen)(2008)De p\u00e5r\u00f8rendes behov \u2013 n\u00e5r demensen flytter ind (Family Members' Needs \u2013 When Dementia is Moving in).Board of Service (Servicestyrelsen) Odense[in Danish]."},{"key":"e_1_2_8_10_1","doi-asserted-by":"publisher","DOI":"10.1097\/01.wad.0000127493.65032.9a"},{"key":"e_1_2_8_11_1","doi-asserted-by":"crossref","first-page":"2","DOI":"10.1093\/geronb\/55.1.S2","article-title":"Predicting caregiver burden and depression in Alzheimer's Disease","volume":"55","author":"Clyburn LD","year":"2000","journal-title":"Journal of Gerontology and social science"},{"key":"e_1_2_8_12_1","doi-asserted-by":"publisher","DOI":"10.1177\/089198870101400403"},{"key":"e_1_2_8_13_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.b155"},{"key":"e_1_2_8_14_1","doi-asserted-by":"publisher","DOI":"10.1136\/jnnp.2009.190934"},{"key":"e_1_2_8_15_1","doi-asserted-by":"publisher","DOI":"10.1097\/00002093-200110000-00006"},{"key":"e_1_2_8_16_1","volume-title":"Crisis and Development","author":"Cullberg J","year":"2008"},{"key":"e_1_2_8_17_1","volume-title":"Family Care for Older Home Living People with Dementia. 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