Knowing the diagnosis and counselling the relatives of a person with dementia: the perspective of home nurses and home care workers in Belgium

Abstract

Home nurses and home care workers share the care for a person with dementia with family caregivers, and are confronted with their needs for medical and service-related information, for advice on how to cope with the behaviour changes, and for emotional support. The first objective of the present study was to describe some of the conditions for effective counselling, such as the perception that knowing the diagnosis has positive consequences for the formal caregivers. A second objective was to describe the formal caregivers' counselling practice, and ascertain its relationship with the psychological variables of attitudes, self-efficacy and subjective norm. A postal questionnaire was sent to 287 home nurses and 1259 home care workers in a defined region of Belgium; the questionnaire was returned by 169 home nurses (58.9% response) and 665 home care workers (52.8% response). The Theory of Planned Behaviour was the organising framework which underpinned the development of the instruments. Only the 168 home nurses and 601 home care workers reporting experience with caregiving to people with dementia were included in the analysis. Formal caregivers indicated that knowing the diagnosis was important, but it could facilitate or hinder caregiving. They were able to describe behavioural characteristics which are indicative of dementia, but only in a limited way, and their strategies to uncover the diagnosis were also limited. Formal caregivers reported that they supported family members emotionally, advised about communication with the person with dementia and informed family caregivers about services. However, providing family caregivers with information about dementia lagged behind these forms of support. In general, nurses scored higher than home care workers. Multiple linear regression analysis was used to investigate the relationships between self-reported practice and the concepts of the model. In both professions, attitudes and self-efficacy were found to be strong independent predictors, and the implications for practice are discussed.

Home care in Europe: a systematic literature review

“…Only a few studies focused on specific types of clients (e.g. people with dementia) [9,31,32,68]. Finally, many studies had a limited geographical scope and explored a single municipality or area.…”

“…Most studies provided information on more than one of the four domains distinguished ('policy & regulation', 'financing', 'organisation & service delivery' and 'clients & informal carers') [8,9,11-16,18,19,21,23,25,26,28-31,34,35,37-41,44,47-51,55,57,58,60-62,64,67,69,71,76-81]; close to one-third focused on only one of them. For most countries information was available for each of the four domains, but the amount of information per domain differed considerably.…”

Factors associated with dementia care practices among community health nurses: Results of a postal survey

“…Care managers also had the highest level of self confidence among community health nurses. These results provide indirect evidence that knowledge of social resources and self confidence are positively correlated to the ability to provide dementia care (Kaduszkiewicz et al, 2008;Roelands et al, 2005). Home health care nurses were the ones that most often received and handled a referral for treatment and provided knowledge about dementia to caregivers.…”

“…among the various roles of community health nurses (Manthorpe et al, 2003;Roelands et al, 2005;Trickey et al, 2000). These studies concluded that attitude and confidence toward dementia care and the role of professionals have a pivotal impact on how dementia care is practiced.…”

Gaps in Understanding the Experiences of Homecare Workers Providing Care for People with Dementia up to the End of Life: A Systematic Review

“…Papers included studies from Israel (Ben-Arie & Lecovich, 2014), Japan (Igarashi et al, 2015), United States (US) Riesenbeck et al 2015;Butler, 2009), Canada (Morgan et al 2016), Belgium (Roelands et al 2005) and the UK (Dawson et al 2015;Devlin & McIlfatrick, 2009;Ryan et al 2004;Herber & Johnston, 2013) …”