Dementia in spousal relationships - Exploring the views of spouses of partners living in long-term care

Abstract

Demens i parrelasjoner – Ektefellers perspektiver når partner bor i bo- og omsorgstilbud Denne avhandlingen peker på den sentrale betydningen som parrelasjonen fortsatt kan å ha for ektefeller etter at partneren deres med demens har flyttet til et bo- og omsorgstilbud, og fremhever betydningen av å tilrettelegge for dette. Fra tidligere forskning om demens i parrelasjoner vet vi at til tross for de mange tapene som ektefeller opplever, og de betydelige følgene som et demensforløp ofte har, kan det å opprettholde nær kontakt og gjensidighet i relasjonen være viktig. Imidlertid er hovedtyngden av forskningen om demens i parrelasjoner utført med fokus på ektefeller til personer med demens som fortsatt bor i hjemmet. Hensikten med denne avhandlingen var derfor å utforske parrelasjonens betydning sett fra ektefellens perspektiv når partner bor i bo- og omsorgstilbud, utforske hvordan parrelasjonen kan opprettholdes og hvilken betydning de fysiske og psykososiale omgivelsene kan ha for opprettholdelse av parrelasjonen. Avhandlingen viser hvordan ektefellenes erfaringer etter flytting var dominert av opplevelsen av å miste fellesskapet i relasjonen med sin partner. Disse erfaringene var både relatert til den fysiske og mentale adskillelsen fra partneren, og følelsen av å være alene. Flyttingen betydde at ektefellene måtte finne nye måter å fortsette livet alene i hjemmet på, noe som kunne oppleves vanskelig på grunn av minnene om partneren som hjemmet representerte. Besøkene i bo- og omsorgstilbudet ble derfor viktig for å opprettholde rollen som ektefelle og styrke samhørigheten med partneren. Funnene viste hvordan ektefellene arbeidet for å opprettholde kontinuitet i relasjonen gjennom hele sykdomsforløpet ettersom sykdommen endret forutsetningene for kommunikasjon og samhandling. Imidlertid strevet ektefellene med å finne sin plass i bo- og omsorgstilbudet, og det ble tydelig at de fysiske og psykososiale omgivelsene ga ulike muligheter for samhandling. Særlig partnerens rom og tilgang på støtte fra helsepersonell var forhold som så ut til å ha betydning for ektefellenes mulighet til å opprettholde parrelasjonen med partneren i bo- og omsorgstilbudet. Avhandlingen ble designet som en konstruktivistisk grounded theory studie. Kvalitative intervjuer, deltagende observasjoner med ektefeller og observasjoner av det fysiske miljøet i bo- og omsorgstilbudene dannet datagrunnlaget for studien. Syv menn og åtte kvinner i alderen 64 til 90 år deltok. Alle hadde langvarige relasjoner bak seg med en partner som nå led av moderat-alvorlig til alvorlig demens og bodde i et bo- og omsorgstilbud.

English abstract Dementia in spousal relationships - Exploring the views of spouses of partners living in long-term care Background Facing dementia in spousal relationships may affect caregiving spouses’ familiar means of communicating and interacting with their partners, impact their ability to maintain mutual support and connection, and cause them to live through several losses. Despite such grave consequences, some studies have found that maintaining close contact and feelings of reciprocity within their relationships is still crucial to many spouses. Given that dementia is inevitably progressive in its nature, relocation to a long-term care facility is often unescapable. Such a significant change in living conditions will influence spouses’ life situation and their ability to maintain continuity in their relationship. However, studies in this life situation and their ability to maintain relationships after placing a partner with dementia in long-term care are scarce. What spousal relationships might mean for spouses following their partners’ relocation to long-term care and how the long-term care setting may influence spouses’ opportunities to maintain contact with their partners are areas that remain relatively unexplored.

Aim The main aim of this thesis was to explore the meaning of spousal relationships for spouses of partners with dementia living in long-term care. In addition, this thesis also aimed to explore and describe how spouses maintain relationships with their partners with dementia living in long-term care, and how physical and social environments influence spouses’ opportunities to maintain relationships when visiting a partner with dementia living in long-term care.

Design and methods This qualitative study was designed using constructivist grounded theory. This approach was chosen because it enable the exploration of ongoing social and interactional processes and how participants construct meanings and actions in specific situations. Fifteen spouses were recruited from long-term care facilities in five different municipalities in Norway: they were seven men and eight women from 64 to 90 years of age. All the spouses had long-term relationships with a partner who suffered from moderate/severe to severe dementia and lived in long-term care. Interviews, participant observations with partners and observations of the physical environment in the long-term care facilities composed the data for the study. Applying a constructivist grounded theory design enabled concurrent engagement in the data collection and analysis. An emphasis on comparative methods and the development of increasingly focused memos guided the analysis. Findings The findings demonstrated that the spouses’ experiences were dominated by the dynamic experience of losing couplehood following the relocation of their partner. These experiences were connected to the physical separation from their partner and the sense of being alone as well as to the loss of a shared past and the inability to share a mutual future. Despite these experiences, being involved and experiencing continuity in the relationship still seemed important. To maintain continuity in their spousal relationship, the spouses constructed togetherness by facilitating situations in which they could connect with their partners. To facilitate these situations, visit routines were altered and adapted to the progression of their partners’ dementia. Opportunities for private interactions in individual rooms and proximity to support from health personnel were highlighted as important environmental factors for the maintenance of relationships in long-term care. Conclusion This thesis highlight the central meaning the spousal relationship seem to have for spouses following their partners’ relocation to long-term care. Relocating their partner and continuing life alone at home requires spouses to reconstruct their ways of living; however, their agency is challenged because of the memories of their partner their home represents. To counteract this experience of discontinuousness, spouses adjust their visiting routines and use everyday activities as continuity-preserving practices to maintain continuity in their relationship. This appears to be important for the maintenance of continuity in their relationships and as a means of reconstructing their known role and identity as a spouse. However, spouses also struggle to find their place in the long-term care facility, which may influence their opportunity to maintain continuity in their relationship. While the common areas seem to pose difficulties for reconnecting, the continuity-preserving practices that occur in individual rooms appear to be particularly important in terms of spouses’ opportunities to maintain continuity in their relationships. In addition, health personnel may play a significant role in supporting spouses, use of continuity-reserving practices to maintain continuity in their spousal relationships. Implications for practice and research. The findings of this study demonstrate the importance of acknowledging and supporting spouses’ continuity-preserving practices in their efforts to maintain continuity in their spousal relationships both by providing spouses with support and by ensuring there are spaces in which these continuity-preserving practices can occur. This study recommends that further research be undertaken to investigate this important yet relatively unexplored subject area. A focus on expanding the sample to involve spouses with a wider range of characteristics, particularly in regard to gender, age and relational background is recommended. In addition, including long-term care facilities with different characteristics related to factors such as spatial organization, organizational setting, staff policy and different sizes and features is also likely to be important.