Educating Nursing Home Staff About the Progression of Dementia and the Comfort Care Option: Impact on Family Satisfaction with End-of-Life Care

Arcand, Marcel; Monette, Johanne; Monette, M.; Sourial, Nadia; Fournier, Lynn; Gore, Brian F.; Bergman, Howard

doi:10.1016/j.jamda.2008.07.008

Cited by 66 publications

(86 citation statements)

References 36 publications

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“…In contrast, pain and shortness of breath are frequently reported in dementia patients. Studies (see Box 1 for the methods of the literature search [29][30][31][32]) report pain in 12% to 76% of patients [28,[33][34][35][36][37][38][39][40][41][42][43][44][45][46][47]. The lower percentages were reported in studies using the Minimum Data Set (MDS) [43], which is mandated in US nursing homes and is known for underreporting [48], in regards to "uncontrolled pain" [38] and in more recent work related to pain [44].…”

Section: Symptoms and Treatment At The End Of Lifementioning

confidence: 99%

“…The results of selected studies have been integrated in a recent review, showing considerable unmet needs in families [85]. Through the beginning of 2010 (Box 1, Table 1), at least 45 studies [28,[33][34][35][36][37][38][40][41][42][43]46,47,52,60,61,63,65,66,80,[86][87][88][89][90][91][92][93][94][95][96][97][98][99]110] in another 26 publications [39,44,45,53,54,64,67,69,[111][112][113][114][115]…”

Section: Research Trends In Dementia At the End Of Lifementioning

confidence: 99%

“…Prospective observational [60,89,91,95,102,106,108] and intervention studies [33,86,87,101,103,104,110] provide the best evidence on how to improve care and 14 have been completed or are ongoing (Table 1). However, most studies have been small, retrospective, or both.…”

Section: Research Trends In Dementia At the End Of Lifementioning

confidence: 99%

“…Several studies have indicated that families may want more information towards the end of life, even if patients sometimes wish less [169]. Education was an effective intervention for staff development in several long-term care studies [170] and a small trail has indicated possible effects on family satisfaction with care [33].…”

Section: Health Care Team Skills and Trainingmentioning

confidence: 99%

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Dying with Dementia: What We Know after More than a Decade of Research

Steen

2010

JAD

220

175

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Abstract. Death with dementia is increasingly common. Although prognostication is difficult, it is an incurable life-limiting illness for which palliative care for the patient is often appropriate. Dementia patients are otherwise at risk of overtreatment with burdensome and possibly non-beneficial interventions and undertreatment of symptoms. Although recent studies indicate encouraging trends of improved palliative care, little evidence supports effectiveness of specific treatments. As of January 2010, at least 45 studies, almost all performed after 2000, have reported on treatment, comfort, symptom burden, and families' satisfaction with care. Over half (25; 56%) of these studies were in US settings, and most were small or retrospective. Few randomized trials and prospective observational studies have been performed so far, but several promising studies have been completed recently or are underway in various countries. Guidelines for care and treatment, still mostly consensus-based, support the benefits of advance care planning, continuity of care, and family and practitioner education. Assessment tools for pain, prognosis, and family evaluations of care have been developed and some have been shown to be effective in clinical practice. With increasing numbers of well-designed, large-scale studies, research in the next decade may result in better evidence-based guidelines and practice.

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Section: Symptoms and Treatment At The End Of Lifementioning

confidence: 99%

Section: Research Trends In Dementia At the End Of Lifementioning

confidence: 99%

Section: Research Trends In Dementia At the End Of Lifementioning

confidence: 99%

Section: Health Care Team Skills and Trainingmentioning

confidence: 99%

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Dying with Dementia: What We Know after More than a Decade of Research

Steen

2010

JAD

220

175

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“…Dementia is a life-limiting disease and is characterized by a progressive loss of cognitive and social functions, difficulties with communication and the ability to perform activities of daily living [1,2,3,4]. Progression of the disease results in residents requiring total care and limits the possibility to benefit from interventions that are targeted at persons with mild or moderate stages of dementia [5,6].…”

Section: Introductionmentioning

confidence: 99%

The Impact of Individualized Interaction on the Quality of Life of Elderly Dependent on Care as a Result of Dementia: A Study with a Pre-Post Design

Vocht

Hoogeboom

Niekerk³

et al. 2015

Dement Geriatr Cogn Disord

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Background: The aim was to assess the impact of a one-to-one 30-min individualized interaction per day on the behavior and quality of life of care-dependent residents with dementia. Methods: In apre-/post-test study, 15 care-dependent residents with dementia (mean age 88.8 years, 86.7% women) were included. Resident behavior was measured using video observation and quality of life using Qualidem. Health care professionals (n = 13) and direct relatives (n = 4) were interviewed about the effect of the intervention. The effect of the intervention was analyzed using the Friedman analysis of variance. Results: The video observation showed that maintaining eye contact, touching, responding to speaking, tracking observable stimuli and asking questions about the activity significantly increased during the intervention. These findings were supported by interviews with nurses who described experiences of making human-to-human contact with the residents. No significant overall changes were found in quality of life. These findings were partially supported by interviews with health care professionals and relatives as some perceived effects beyond the 30-min intervention. Conclusions: Interaction offered on a one-to-one basis tailored to individual preferences significantly improved positive interactive behavior of care-dependent residents with dementia during the intervention. Surveys revealed no significant overall effect of the intervention. The interviews indicated there might be effects beyond the intervention for some residents.

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