Ratings of symptoms and comfort in dementia patients at the end of life: comparison of nurses and families

Steen, Jenny T. van der; Gijsberts, M.J.H.E.; Knol, D.L.; Deliens, Luc; Muller, Martien T.

doi:10.1177/0269216309103124

Cited by 35 publications

(44 citation statements)

References 43 publications

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“…In addition to pain and shortness of breath, US and Dutch families and Dutch nurses also reported that dementia patients experienced discomfort, restlessness, and difficulty swallowing more than other symptoms [53,54]. Agitation is a symptom which is less frequently assessed in studies on the last phase of life, but may be as common as pain and shortness of breath [28,34,44,53,54].…”

Section: Symptoms and Treatment At The End Of Lifementioning

confidence: 99%

“…Agitation is a symptom which is less frequently assessed in studies on the last phase of life, but may be as common as pain and shortness of breath [28,34,44,53,54]. One study found that psychiatric symptoms such as agitation and depression were less bothersome to family members than pain, breathing problems, and memory loss [46].…”

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%

See 2 more Smart Citations

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

Steen

2010

JAD

223

177

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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: Symptoms and Treatment At The End Of Lifementioning

confidence: 99%

Section: Research Trends In Dementia At the End Of Lifementioning

confidence: 99%

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

Steen

2010

JAD

223

177

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“…[39][40][41] Where the views and experiences of family carers have been sought, it is usually to evaluate quality of life, quality of death and proxy views regarding a good death, on behalf of their relative, post-bereavement. 20,[42][43][44][45] Rarely have the views and experiences of family caregivers in their own right been elicited.…”

mentioning

confidence: 99%

Approaching the end of life and dying with dementia in care homes: the accounts of family carers

Hennings

Froggatt

Keady

2010

Rev. Clin. Gerontol.

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Link to this article: http://journals.cambridge.org/abstract_S0959259810000092How to cite this article: J Hennings, K Froggatt and J Keady (2010). Approaching the end of life and dying with dementia in care homes: the accounts of family carers. SummaryResearch into end of life and dying with dementia in care homes from the family carer's perspective is limited. From the available evidence, it appears that family carers find themselves in an unfamiliar situation about which they lack knowledge and experience. Whilst dementia tends not to be acknowledged as a terminal illness by many family carers, they are expected to make end of life decisions on behalf of their relatives. Family carer decision-making is underpinned by values of quality of life, previously expressed wishes, comfort provision and dignity preservation. This is often approached when family carers are grieving for the anticipated loss of their relative and have their own personal needs that require to be addressed. Within a care home setting, a curative care-palliative care split is unhelpful in resolving these tensions and a model of comprehensive care appears a more appropriate approach. This requires ongoing communication between the person with dementia, family members and professionals from the early stages of the condition.

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“…3 Patients with advanced dementia frequently cannot verbalize their needs; proxies may assess quality of dying and end-of-life care including families' satisfaction, which requires specific instruments. [4][5][6] Selecting the optimal observational study design to describe end-of-life experiences and factors associated with end-of-life outcomes involves choosing either between collection of data both before and after death (prospectively; "cohort study") or after death exclusively (retrospectively on decedents; "case series," or "mortality follow-back" 7,8 design).…”

mentioning

confidence: 99%

Retrospective and Prospective Data Collection Compared in the Dutch End of Life in Dementia (DEOLD) Study

Steen¹,

Ribbe²,

Deliens

et al. 2014

Alzheimer Disease &Amp; Associated Disorders

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Studying end of life in dementia patients is challenging because of ill-defined prognoses and frequent inability to self-report. We aim to quantify and compare (1) feasibility and (2) sampling issues between prospective and retrospective data collection specific to end-of-life research in long-term care settings. The observational Dutch End of Life in Dementia study (DEOLD; 2007 to 2011) used both prospective data collection (28 facilities; 17 nursing home organizations/physician teams; questionnaires between January 2007 and July 2010, survival until July 2011) and retrospective data collection (exclusively after death; 6 facilities; 2 teams, questionnaires between November 2007 and March 2010). Prospective collection extended from the time of admission to the time after death or conclusion of the study. Prospectively, we recruited 372 families: 218 residents died (59%) and 184 (49%) had complete physician and family after-death assessments. Retrospectively, 119 decedents were enrolled, with 64 (54%) complete assessments. Cumulative data collection over all homes lasted 80 and 8 years, respectively. Per complete after-death assessments in a year, the prospective data collection involved 37.9 beds, whereas this was 7.9 for the retrospective data collection. Although age at death, sex, and survival curves were similar, prospectively, decedents' length of stay was shorter (10.3 vs. 31.4 mo), and fewer residents had advanced dementia (39% vs. 54%). Regarding feasibility, we conclude that prospective data collection is many fold more intensive and complex per complete after-death assessment. Regarding sampling, if not all are followed until death, it results in right censoring and in different, nonrepresentative samples of decedents compared with retrospective data collection. Future work may adjust or stratify for dementia severity and length of stay as key issues to promote comparability between studies.

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Ratings of symptoms and comfort in dementia patients at the end of life: comparison of nurses and families

Cited by 35 publications

References 43 publications

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

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

Approaching the end of life and dying with dementia in care homes: the accounts of family carers

Retrospective and Prospective Data Collection Compared in the Dutch End of Life in Dementia (DEOLD) Study

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