‘The path through the unknown’: the experience of being a relative of a dementia‐suffering spouse or parent

Abstract

Aims and objectives. 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. Background. 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-suffering person. Design and methods. Twenty-one stories from relatives were included in this study, and these stories were analysed by employing Kirsti Malterud's method 'systematic text condensation'. The relatives were divided into four groups: sons, husbands, daughters and wives. Results. 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-suffering husbands to physical abuse. The wives also suffered from self-criticism. Conclusions. 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. Relevance to clinical practice. Relatives play a significant role in the well-being 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.

Living with a partner with dementia: a systematic review and thematic synthesis of spouses' lived experiences of changes in their everyday lives

“…Subtheme (1) Transition in marital relation in everyday life (Bergman et al, 2016;Boylstein & Hayes, 2012;Ducharme et al, 2013;Fjellstr€ om et al, 2010;Hellstr€ om et al, 2017;Lin et al, 2012;Madsen & Birkelund, 2013;Massimo et al, 2013;O'Shaughnessy et al, 2010;Quinn et al, 2008;Vikstr€ om et al, 2008). Subtheme (2) Management of transformed marital relation (Bergman et al, 2016;Boyle, 2013;Fjellstr€ om et al, 2010;Hellstr€ om et al, 2017;Hellstr€ om et al, 2007;Madsen & Birkelund, 2013;O'Shaughnessy et al, 2010;Pretorius et al, 2009;Quinn, Clare, & Woods, 2009;Shim et al, 2013;Vikstr€ om et al, 2008 ( Ducharme et al, 2013).…”

“…Subtheme (2) Management of transformed marital relation (Bergman et al, 2016;Boyle, 2013;Fjellstr€ om et al, 2010;Hellstr€ om et al, 2017;Hellstr€ om et al, 2007;Madsen & Birkelund, 2013;O'Shaughnessy et al, 2010;Pretorius et al, 2009;Quinn, Clare, & Woods, 2009;Shim et al, 2013;Vikstr€ om et al, 2008 ( Ducharme et al, 2013). Other spouses found it beneficial to talk to friends and joining the Alzheimer's Society, as it helped them understand dementia and proved supportive as mutual experiences were shared (Quinn et al, 2008).…”

“…Emotional reactions occurred due to changes and loss in marital identity, loss in intimacy and the changes within the relationship (Bergman et al, 2016;Boylstein & Hayes, 2012;Madsen & Birkelund, 2013;Massimo et al, 2013). Spouses experienced loss of shared meanings, roles and connection to their spouses (Massimo et al, 2013).…”

“…Especially male spouses were affected negatively due to a feeling of detachment from their social network which generally did not understand the illness (Madsen & Birkelund, 2013). Female spouses considered themselves evil when their living circumstances became so challenging that they wished that their partners had died (Madsen & Birkelund, 2013).…”

Problems experienced by informal caregivers with older care recipients with and without cognitive impairment

“…When informal caregivers feel that the care is not sufficient, this may lead to feelings of burn out, depression, and guilt. (Almberg, Grafström, & Winblad, 1997, Collins & Jones, 1997Donaldson, Tarrier, & Burns, 1998;Edwards & Scheetz, 2002;Ekwall & Hallberg, 2007;Gonyea, Paris, & De Saxe Zerden, 2008;Madsen & Birkelund, 2013;Roach, Laidlaw, Gillanders & Quinn, 2013;Springate & Tremont, 2014) In particular, cognitive problems of the care recipient are related to an increased complexity of the care and increased burden of the informal caregiver (Fowler, Fisher, & Pitts, 2014;Nordtug & Holen, 2011;Sequiera, 2013;Wenzel & Poynter, 2014). Apart from stress, problems in the social and relational domain occur, (Feinberg & Whitlatch, 2002), especially when the care recipient has cognitive problems (Harris, 2013;Luchetti et al, 2009).…”