As the population ages, the number of people with dementia increases. An emerging body of research is focusing on living with dementia and understanding the experience of caring and the care burden. There is much less research on the meaning of dementia from the perspective of an older couple’s spousal relationship and related intimacy. This qualitative study explores the meanings of emotional and physical intimacy and the changes brought by dementia in the couplehood of persons with dementia and their spousal carers. The data comprise semi-structured interviews with 35 persons. The interviews were analysed using inductive qualitative content analysis. Four themes describing the meanings of relational intimacy were identified: intimacy as a striving force, intimacy turning into worrisome behaviour, intimacy as physical and emotional dependency, and intimacy turning into one-sided caring for a partner. Dementia changes the intimate relationship in many ways, but shared affection and long-term partnership help maintain the spousal relationship. While dementia may bring about conflicts and behavioural challenges in an intimate relationship, the couple’s shared intimacy and a sense of responsibility for one another may serve as a resource and support the continuity of couplehood.

Background People with memory disorders often need care and help from family carers and health and social care providers. Due to the deterioration of cognitive capacity and language skills, they may be unable to convey their thoughts and care preferences to other people. As a result, their agency may become restricted. We investigated the descriptions provided by people with memory disorders and spousal carers of their influence on care in encounters with formal care providers. Methods Qualitative thematic analysis was used to identify, analyze, and report themes that describe encounters with professionals in different social or healthcare environments. In-depth interview data were gathered from 19 spouse carers and 15 persons with memory disorders. Findings Three themes out of four describe how people with memory disorders and their spouse carers influence formal care: Acquiescence, negotiating care decisions, and taking control. The fourth theme describes lack of influence. People with memory disorders and their spouse carers have ways to influence care, but spouse carers identified more ways of doing so. Both either accepted and followed the care guidelines by the formal carers or took control of the situation and made their own decisions. Spouse carers also sought to influence care decisions through negotiations with formal carers. When formal carers’ decisions were experienced as inconsistent or the rationale of their actions difficult to follow, the possibilities to influence care were limited. Conclusions People with memory disorders and their family carers are often in a disadvantaged position as they lack power over the health and social care decision-making during the illness, which is often guided by structural factors. To support the agency of people with memory disorders and to promote shared decision-making, clarification of the service structure and clearer communication between the different parties involved in care are required.

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Muistisairauksiin usein liittyvät kognitiiviset ja persoonallisuuden muutokset sekä itseilmaisun vaikeudet saattavat ilmetä käyttäytymisen muutoksina. Puoliso ja muut läheiset kohtaavat nämä muutokset ensimmäisinä. Laadullisessa tutkimuksessamme selvitimme, millaisissa tilanteissa muistisairauden aiheuttamia ongelmallisina ja kielteisinä koettuja käyttäytymisen muutoksia ilmaantuu, ja miten ne vaikuttavat parisuhteen vastavuoroisuuteen. Käyttäytymisen muutoksista käytetään termiä ’käytösoireet’. Aineiston analyysissä hyödynsimme sosiaalisen vaihdon teoriaa. Käyttäytymisen muutokset tulivat puheeksi vain niissä haastatteluissa, joissa muistisairautta sairastava puoliso oli aviomies. Vaikka puoliso-omaishoitajat osasivat odottaa puolison käyttäytymisen muuttuvan sairauden myötä, muutokset tulivat yllätyksenä. Käytösoireet liittyivät tilanteisiin, joissa puoliso-omaishoitaja neuvoi, ohjasi tai rajoitti muistisairaan puolisonsa arkirutiineissa toimimista, sekä tilanteissa, joissa muistisairautta sairastava joutui kohtaamaan sairautensa. Sosiaalisen vaihdon teorian mukainen vastavuoroisuus ei toteudu parisuhteessa, jossa toisella puolisoista on etenevään muistisairauteen liittyviä ongelmalliseksi koettuja käytösoireita. Puoliso-omaishoitaja joutuu taiteilemaan arjessa välttyäkseen konfliktitilanteilta, eikä muistisairas puoliso välttämättä tunnista näitä tilanteita. Usein pitkään parisuhteeseen liittyvät vahvat tunnesiteet saavat jatkamaan yhteistä elämää. Behavioural changes caused by dementia and the reciprocity of a couplehood Usually, the spouse is the first to face the cognitive and personality changes associated with their partner´s dementia, which may manifest as behavioural changes. In this qualitative study, we examined in which situations disruptive behavioural symptoms caused by dementia appear and how they affect the reciprocity of spouses. The theory of social exchange was used to interpret the data. Disruptive symptoms were mentioned only in interviews of couples in which the spouse with dementia was the husband. Although the spousal carers expected that their partner’s behaviour might change with the illness, the behavioural symptoms came as a surprise. Behavioural symptoms appeared in situations where the partner with dementia tried to control the activities of their spousal carer, when the spousal carer had to advise and guide the partner´s daily routines, or limit what the partner with dementia was doing. Behavioural changes also appeared when the partner with dementia had to face his own illness. The theory of social exchange emphasizes reciprocity as the basis of an intimate relationship. When one of the spouses had dementia that causes disruptive behavioural changes, reciprocity was not possible. The spousal carer has to come up with various strategies to cope with daily life and avoid conflicts. These situations and efforts may not be recognized at all by the person with dementia. The strong emotional ties associated with a long-term intimate relationship make the spousal carers stay in the relationship.

Verkko-opiskelun ei tarvitse olla yksinäistä puurtamista. Miten opettaja rakentaa vuorovaikutusta ja ohjausta suunnitellessaan ja toteuttaessaan opetusta verkossa? Pedagogisilla ratkaisuilla voidaan tukea integratiivista ajattelua. Opiskelijoiden aikaisempi kokemus ja osaaminen ovat voimavara avoimen yliopiston verkko-opetuksessa.