Who Knows, who Cares? Dementia Knowledge among Nurses, Care Workers, and Family members of People Living with Dementia

Abstract

The number of people with dementia is increasing rapidly worldwide. Commensurate with population ageing, the use of nursing homes in Australia (known as residential aged care facilities) for individuals with dementia is growing. As a terminal condition, dementia is best managed by instituting a palliative approach to care. A good knowledge of dementia, including its progression and management, among staff and families of people living with dementia is essential for clear decision making and the provision of appropriate care. Yet there is limited information regarding relative levels of dementia knowledge. This paper reports the results of a study that assessed dementia knowledge among these two cohorts using the Dementia Knowledge Assessment Tool; the study surveyed 279 staff members and 164 family members of residents with dementia. Dementia knowledge deficits were evident in both cohorts across a range of areas. It is critical that dementia knowledge deficits are identified and addressed in order to support evidencebased dementia care. Résumé / Le nombre de personnes atteintes de démence augmente rapidement à travers le monde. Ainsi on remarque en Australie une augmentation du nombre de ces malades admis dans les institutions de soins de longue durée. La démence étant une maladie terminale il appert que l'approche palliative est la meilleure forme de soins. Cependant, il est essentiel que le personnel soignant autant que les familles aient une bonne connaissance de la maladie, de ses symptomes, de la façon de traiter les maladies, et des décisions à prendre. Or, on en sait très peu quant au niveau de connaissances de ces deux groupes de personnes sur le sujet. Cet article porte sur les résultats

Being a close family member of a person with dementia living in a nursing home

“…, Robinson et al . ). Even so, Godwin and Waters () suggest that it could be possible to talk with the residents about their impending death, as they found persons with advanced dementia able to express their preferences concerning end‐of‐life treatment.…”

Dementia Knowledge Assessment Scale: Development and Preliminary Psychometric Properties

“…The DKAS provides an up‐to‐date measure of dementia knowledge that addresses limitations of existing instruments . Through the use of an adapted Likert scale, the DKAS provides fine‐grained information at the item level, which permits in‐depth investigation of knowledge deficiencies and variation between and within cohorts.…”

“…The authors recently developed a further measure, the Dementia Knowledge Assessment Tool (DKAT 2), as a quiz for aged care staff and family caregivers. Limitations and gaps that have been identified in these measures include testing and development with small and narrowly defined populations, lack of generalizability, limited focus on biomedical domains or particular types or stages of dementia, observed ceiling effects in educated respondents, simplistic response categories, and item ambiguity …”

Palliative care for people with dementia in the terminal phase: a mixed-methods qualitative study to inform service development

“…This means that the involvement of family members warrants a particular focus from and significance for professional caregivers. Family members are both caregivers and proxy decision maker in need of extra support and information; for example, to anticipate future events and understand the terminal nature of the disease [3, 9–11]. …”