title: Ethical aspects of caregivers' experience with persons with dementia at mealtimes.
abstract: BACKGROUND
  Persons with dementia are at risk of malnutrition and thus in need of assistance during mealtimes. Research suggest interventions for caregivers to learn how to facilitate mealtimes and eating, while other suggest a working environment enabling the encounter needed to provide high-quality care. However, the phenomenon of caring for this unique population needs to be elucidated from several perspectives before suggesting suitable implications that ensure their optimal health.
  
  
  OBJECTIVE
  To illustrate the meanings within caregivers' experiences of caring for persons with dementia during mealtime situations. We also measured weight and food intake among individuals with dementia to explain better the phenomenon of caring for them during mealtimes.
  
  
  METHODS
  Mixed method including focus group interviews with seven caregivers analyzed using phenomenological hermeneutics. In addition, for nine persons with dementia, weight and food intake were collected and descriptive statistics were calculated.
  
  
  METHODS
  Ethical review was obtained from an ethics committee, and all caregivers signed a consent form after being informed on the issue of research ethics. Relatives for persons with dementia were informed and signed the consent. In addition, throughout the study, the persons' expressions were observed aiming to respect their vulnerability, integrity, and dignity.
  
  
  RESULTS
  One theme emerged from interviews (struggling between having the knowledge and not the opportunity), which was built upon three subthemes (being engaged and trying; feeling abandoned and insufficient; being concerned and feeling guilty). Seven of nine persons with dementia lost a minimum of 1.3 kg of weight and ate a maximum of 49.7% of the food served.
  
  
  CONCLUSIONS
  Caregivers struggle because they have knowledge about how to provide high-quality care but are unable to provide this care due to organizational structures. The weight loss and insufficient eating among the persons with dementia may support this conclusion. Sufficient time for adequate care should be provided.
authors.affiliation: Mälardalen University, Sweden lena.marmstal.hammar@mdh.se.
authors.forename: Lena Marmstål
authors.initials: LM
authors.lastname: Hammar
authors.affiliation: Karolinska Institute, Sweden; Sophiahemmet College University, Sweden.
authors.forename: Anna
authors.initials: A
authors.lastname: Swall
authors.affiliation: Mälardalen University, Sweden.
authors.forename: Martina Summer
authors.initials: MS
authors.lastname: Meranius
mesh_terms: D000328:Adult; D000368:Aged; D017028:Caregivers / Q000941:ethics* / Q000523:psychology; D003704:Dementia / Q000451:nursing* / Q000523:psychology; D005247:Feeding Behavior / Q000523:psychology*; D005260:Female; D017144:Focus Groups; D007722:Health Knowledge, Attitudes, Practice; D066297:Hermeneutics; D006801:Humans; D062407:Meals / Q000523:psychology*; D008875:Middle Aged; D009735:Nursing Homes / Q000458:organization & administration; D015431:Weight Loss
keywords: Caregivers; dementia; ethical aspects; focus group interviews; malnutrition; mealtime; mixed method; phenomenological hermeneutics