BACKGROUND: Every person has the right to autonomy, and to be involved in decisions about their care. When persons with dementia have difficulties in expressing what they want, their autonomy is challenged. Staff should strive to involve the person in care decisions, to obtain consent and to avoid the use of coercion and restraints. However, care without consent exists and coercion and restraints are being used. In order to improve care, further knowledge is warranted.

AIMS: The purpose of this study was to explore staff's experiences of obtaining consent when caring for persons with dementia.

METHODS: In total 14 focus group interviews were conducted with staff with experience of dementia care who work in either home care or residential care in Sweden. An inductive qualitative content analysis was used to analyze the collected data.

RESULTS: Three categories were generated describing staff experiences of consent in dementia care: the person as the decision-maker, the staff as the decision-makers, and the viability of the consent. Overall, staff found it difficult to know if they really had consent from the individual. Even if the person verbally gave consent, it was challenging to know if the person really understood what they had consented to. Common to all three categories was the significance of the relationship between the person with dementia and staff: getting to know the person, recognizing the person's response in terms of their facial expressions and body language as well as being able to explain and justify specific actions to the person.

CONCLUSION: Staff need better conditions in dementia care, including training and time to reflect on how to obtain consent. A person-centered approach can be one way to develop care and ensure that persons with dementia are allowed autonomy and to share in making decisions.

Older persons with dementia have several risk factors for being exposed to domestic abuse, for example dependency on others to manage daily life. The purpose of the study was to explore how staff act and reason when suspecting domestic abuse perpetrated by informal caregivers of persons with dementia. Eight semi-structured group interviews were conducted with staff (n = 39) working with persons with dementia living in their ordinary homes. A thematic analysis generated two themes; Missing a map for guidance and Being left to one’s own inner compass for direction indicating that staff experienced a lack of guidelines and protocols to work from when suspecting abuse. This resulted in staff taking actions based on their own norms, values, and experiences when suspecting domestic abuse. Not knowing how to act risks leading to staff ending up doing nothing or being unable to identify effective interventions, accompanied by feelings of guilt and ethical stress. The results highlight the necessity of providing staff with tools for how to act when they suspect domestic abuse, such as collaboration with others, colleagues, and other organisations where different options for interventions can emerge.

Svensk titel: En svensk studie om hur personal resonerar och agerar när demisstänker våld i nära relationer som begås av anhöriga tillpersoner med demenssjukdom.

Äldre personer med demenssjukdom har flera riskfaktorer för att utsättas för våld i nära relationer, till exempel att vara beroende av andra för att klara det dagliga livet. Syftet med studien var att undersöka hur personal agerar och resonerar vid misstanke om våld i nära relationer som begås av anhöriga till personer med demenssjukdom. Åtta semistrukturerade gruppintervjuer genomfördes med personal (n = 39) som arbetar med personer med demenssjukdom som bor i ordinärt boenden. En tematisk analys genererade två teman; karta saknas för att ge guidning och vara utlämnad till en inre kompass för att finna riktning, vilket tyder på att personalen upplevde en brist på rutiner och riktlinjer att utgå ifrån vid misstanke om våld i nära relation. Detta resulterade i att personalen vidtog åtgärder utifrån sina egna normer, värderingar och erfarenheter vid misstanke om våld i nära relationer. Att inte veta hur man ska agera riskerar att leda till att personalen inte gör något eller har svårighter att hitta effektiva insatser, vilket kan leda till skuldkänslor och etisk stress. Resultatet belyser behovet av att ge personalen verktyg för hur de ska agera vid misstanke om våld i nära relationer, såsom samarbete med andra, kollegor och andra verksamheter där olika alternativ för insatser kan växa fram.