Meeting the Emotional Needs of Hospital Patients With Dementia: A Freelisting Study With Ward Staff.

BACKGROUND AND OBJECTIVES: People with dementia are vulnerable when in hospital, with serious risks to their physical and emotional well-being. Hospital staff are expected to understand and respond to the emotions of the patient; however, it is not known how this can be achieved. We provide a concise description of achievable emotion-focused care for patients with dementia. DESIGN AND METHODS: Exploratory qualitative interviews were conducted with a whole U.K. hospital ward providing dementia care, constituting 47 staff members. Staff responded to four questions using ethnographic freelisting. They listed (a) all the ways they notice the emotional distress of patients with dementia, (b) the causes of emotional distress, (c) all the ways they respond, and (d) the responses that seem to work. Cultural consensus analysis was applied. RESULTS: A single-factor solution for each question indicated a consensus approach to emotional distress. Emotional distress was noticed from agitation (Smith's saliency score, 0.418), crying (0.350), and increased mobilizing (0.238). The main causes of distress were the unfamiliar hospital environment (0.355) and not knowing what is happening (0.313). The most effective ways to respond to emotional distress required knowing the person (0.299), talking (0.283), and being with the person (0.269). DISCUSSION AND IMPLICATIONS: The findings expand what is understood of behavioral and psychological symptoms of dementia; these communicated emotional distress with well-understood causes. Prioritized ways of responding to emotional distress described person-centered care. The results offer a menu of options for providing emotionally responsive care for patients with dementia in hospital. Future research should evaluate the care described.

Importance of personal and professional experience for hospital staff in person-centred dementia care: a cross-sectional interview study using freelisting in a UK hospital ward.

OBJECTIVE: To detail how hospital staff with differing personal and professional caregiving experiences approach the care of patients with dementia, in order to make practical recommendations for practice. DESIGN: Cross-sectional qualitative interviews. SETTING: A UK hospital ward providing dementia care. PARTICIPANTS: A complete hospital ward staff team, constituting 47 hospital staff from 10 professions. METHODS: Hospital staff were asked to list their approaches to emotion-focused care in individual, ethnographic freelisting interviews. Cultural consensus analysis was used to detail variations in approaches to dementia care between staff subgroups. MAIN OUTCOME MEASURES: The most salient listed descriptions of care emphasised by staff members with personal experience of dementia caregiving when compared with staff members without such experience, and descriptions from staff newer to the profession compared with staff with more years of professional dementia caregiving experience. RESULTS: Subgroups of hospital staff showed different patterns of responses both in how they noticed the emotional distress of patients with dementia, and in prioritised responses that they deemed to work. Hospital staff with professional experience of dementia caregiving and staff with fewer years of professional experience prioritised mutual communication and getting to know each patient. CONCLUSIONS: Subgroups of hospital staff with personal caregiving experiences and fewer years of professional care experience were more likely to describe person-centred care as their routine ways of working with patients with dementia. It is recommended that personal experience and the novice curiosity of hospital staff be considered as valuable resources that exist within multidisciplinary staff teams that could enhance staff training to improve the hospital care for patients with dementia.

Emotional distress with dementia: A systematic review using corpus-based analysis and meta-ethnography.

OBJECTIVE: More understanding is needed about the emotional experiences of dementia from the perspective of the individual. This understanding can then inform the provision of health care to meet individual needs. This systematic review aimed to present all available descriptions of emotional distress and explanations for emotional distress experienced by individuals with dementia, articulated personally and by others. METHODS: A systematic mixed-method review identified literature that was screened and quality appraised. Data were analysed quantitatively and qualitatively using corpus-based methods and meta-ethnography. RESULTS: The 121 included studies showed that individuals with dementia have expressed emotional distress comprehensibly. Family, professional caregivers, clinicians, and academic writers have also observed and described extreme emotional experiences. Feeling fearful and lonely were predominant and show the importance of anxiety in dementia. Explanations for emotional distress included threats to universal, human needs for identity, belonging, hope, and predictability. CONCLUSIONS: The variable and personal emotional experiences of individuals with dementia are well described and should not continue to be overlooked. Limitations, future research, and clinical implications are discussed.

Where is the happiness in dementia?

Our current research aims to explore how the emotional experiences of individuals with dementia are understood, and to improve the design and delivery of care interventions. A preliminary, incidental, finding from our initial systematic literature search is reported here. Increasingly, the experience of dementia is understood from the viewpoint of the individual. However, this is not reflected in the body of research literature, which is predominantly orientated towards detailing the neuropsychiatric symptoms of mood, cognition, behavior, or physiology and "managing" the condition (Cerejeira et al., 2012). In this way, the whole and varied experiences of dementia are not recognized. There is a distance between these differing perspectives of dementia in the available literature.