Evaluations of end of life with dementia by families in Dutch and U.S. nursing homes

Steen, Jenny T. van der; Gijsberts, Marie-José; Muller, Martien T.; Deliens, Luc; Volicer, Ladislav

doi:10.1017/s1041610208008399

Cited by 31 publications

(28 citation statements)

References 36 publications

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“…One paper reports survey data that used End of Life in Dementia Scales, but this review only includes findings from the 'Satisfaction with Care Tool' used to elicit family perspectives within the study. 48 Three of the studies were longitudinal, two of which collected qualitative data. One study used a concurrent mixed methods design 49 and one used a prospective cohort study design.…”

Section: Resultsmentioning

confidence: 99%

“…Family carers frequently rated an item on information and decision-making as not applicable in a study from the Netherlands where a model of shared decision-making is in place. 48 Family carers' responses indicated that they were well informed regarding the condition of their relative and that decisions were shared between family carers and professionals. This shared decision-making model is characterized by family involvement from the moment of admission of the person to the nursing home and open ongoing dialogue between family members and professionals.…”

Section: Making Decisionsmentioning

confidence: 99%

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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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Section: Resultsmentioning

confidence: 99%

Section: Making Decisionsmentioning

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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“…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%

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

Steen

2010

JAD

Self Cite

224

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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Current awareness in geriatric psychiatry

2009

Int J Geriat Psychiatry

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In order to keep subscribers up‐to‐date with the latest developments in their field, John Wiley & Sons are providing a current awareness service in each issue of the journal. The bibliography contains newly published material in the field of geriatric psychiatry. Each bibliography is divided into 9 sections: 1 Reviews; 2 General; 3 Assessment; 4 Epidemiology; 5 Therapy; 6 Care; 7 Dementia; 8 Depression; 9 Psychology. Within each section, articles are listed in alphabetical order with respect to author. If, in the preceding period, no publications are located relevant to any one of these headings, that section will be omitted

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Evaluations of end of life with dementia by families in Dutch and U.S. nursing homes

Abstract: Background:The End-of-Life in Dementia (EOLD) scales comprise the most specific set of instruments developed for evaluations of patients' end of life by their families. It is not known whether the EOLD scales are useful for cross-national comparisons.

Cited by 31 publications

References 36 publications

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

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

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

Current awareness in geriatric psychiatry

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