Older people dying with dementia: a nationwide study

Meeussen, Koen; Block, Lieve Van den; Echteld, Michael A.; Boffin, Nicole; Bilsen, Johan; Casteren, Viviane Van; Deliens, Luc

doi:10.1017/s1041610212000865

Cited by 38 publications

(39 citation statements)

References 28 publications

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“…31 A Belgian nationwide mortality study through the Sentinel general practitioner (GP) network retrospectively reported place of death for ≥65-year-olds with GP-confirmed dementia. 32 In this study, 71% of those with severe dementia died in a care home, as did 41% with mild dementia. Although these percentages are again higher than we found, these findings are in line with our findings that dying in a care home is more likely with increasing cognitive impairment (mild/ moderate: 28%, severe: 61%).…”

Section: Comparison With Existing Literaturementioning

confidence: 50%

“…The Belgian results do not include sufficient detail to compare whether they also found the contrasting situation for the sub-set of individuals with severe cognitive impairment living in the community whom we found were the most likely group of all to move. 32 Other Sentinel programme reports highlighted admissions to hospital as highest closest to death for all older people. 17,35 Our data suggested most transitions occurred soon before death, but we lack data to compare time frames in such detail.…”

Section: Comparison With Existing Literaturementioning

confidence: 99%

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Place of death and end-of-life transitions experienced by very old people with differing cognitive status: Retrospective analysis of a prospective population-based cohort aged 85 and over

et al. 2013

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Background: Despite fast-growing 'older old' populations, 'place of care' trajectories for very old people approaching death with or without dementia are poorly described and understood. Aim: To explore end-of-life transitions of 'older old' people across the cognitive spectrum. Design: Population-based prospective cohort (United Kingdom) followed to death. Setting/participants: Mortality records linked to 283 Cambridge City over-75s Cohort participants' cognitive assessments <1 year before dying aged ≥85 years. Results: Overall, 69% were community dwelling in the year before death; of those with severe cognitive impairment 39% were community dwelling. Only 6% subsequently changed their usual address. However, for 55% their usual address on death registration was not their place of death. Dying away from the 'usual address' was associated with cognition, overall fewer moving with increasing cognitive impairment -cognition intact 66%, mildly/moderately impaired 55% and severely impaired 42%, trend p = 0.003. This finding reflects transitions being far more common from the community than from institutions: 73% from the community and 28% from institutions did not die where last interviewed (p < 0.001). However, severely cognitively impaired people living in the community were the most likely group of all to move: 80% (68%−93%). Hospitals were the most common place of death except for the most cognitively impaired, who mostly died in care homes. Conclusion: Most very old community-dwelling individuals, especially the severely cognitively impaired, died away from home. Findings also suggest that long-term care may play a role in avoidance of end-of-life hospital admissions. These results provide important information for planning end-of-life services for older people across the cognitive spectrum, with implications for policies aimed at supporting home deaths. KeywordsCognitive impairment, dementia, aged, 80 and over, aged, frail elderly, patient transfer, residential characteristics, homes for the aged, nursing homes, delivery of health care, terminal care 221What is already known about the topic?• More people will be dying in very old age and dying with dementia or cognitive impairment.• Half the very old move in the last year of life and die away from their usual residence, but it is poorly understood how cognitive impairment affects these transitions. What this article adds?• Prospective population-based research with very old people, including cognitive assessments, reveals patterns in individual trajectories through care settings that routine data cannot explore.• Although 39% of ≥85-year-olds with severe cognitive impairment live in the community in their last year of life, only 8% die there, compared with 20% home deaths among cognitively unimpaired ≥85-year-olds.• The proportions of very old people dying in hospitals or in care homes decrease and increase, respectively, with worsening cognitive impairment. Implications for practice, theory or policy• Community end-of-life care provision needs to in...

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Section: Comparison With Existing Literaturementioning

confidence: 50%

Section: Comparison With Existing Literaturementioning

confidence: 99%

Place of death and end-of-life transitions experienced by very old people with differing cognitive status: Retrospective analysis of a prospective population-based cohort aged 85 and over

et al. 2013

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“…Yet, uptake of ACP is known to be low among people with dementia [13,14] while prognosis is poor. Decision-making in an acute setting concerning diagnostic and therapeutic interventions (including living wills, instructions regarding antibiotic therapy, resuscitation, or admission to an intensive care unit) is less complicated within the context of a previous discussion on preferences and personal goals of terminal care and management.…”

Section: Discussionmentioning

confidence: 99%

“…One of the components of ACP is the discussion on whether to initiate or refrain from diagnostic or therapeutic interventions. Yet, uptake of ACP is increasing in the general elderly population and in patients with CVD and cancer, but is known to be low among people with dementia [13,14]. However, life expectancy in dementia is poor and decision-making in an acute setting concerning diagnostic and therapeutic interventions (including living wills, instructions regarding antibiotic therapy, resuscitation, or admission to an intensive care unit) is less complicated within the context of a previous discussion on preferences and personal goals of terminal care and management.…”

Section: Introductionmentioning

confidence: 99%

Evaluation of Underlying Causes of Death in Patients with Dementia to Support Targeted Advance Care Planning

Vorst

Koek

Bots

et al. 2016

JAD

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Leading UCDs were dementia (17.5% in men and 23.7% in women) and cardiovascular disease (CVD) (18.7% and 19.2%, respectively). When compared to the GP, dementia was a more common UCD (RR in men 4.65, 95%CI 4.43-4.88), while CVD (RR in men 0.67, 95%CI 0.65-0.68) and cancer (RR 0.40, 95%CI 0.39-0.41) were less common. These differences were more pronounced in patients aged between 60-69 as compared to those aged ≥90 years. Patients with AD died less often of cerebrovascular diseases as compared to VaD (RR in men 0.53,. Conclusion: UCDs in patients with dementia differs from that of the GP, as dementia is more often and cancer less often an UCD. Although less frequent compared to the GP, CVD also is one of the leading UCDs in patients with dementia. This information is valuable for targeted advance care planning.

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“…However, a cross-national retrospective study showed that, in a population of patients who died non-suddenly, GP-patient discussion of treatment preferences occurred for 25% of patients in Belgium [9]. Cancer patients are also more often involved in the process of ACP than non-cancer patients, suggesting that initiation of ACP with other patient groups has its own challenges [10].…”

Section: Introductionmentioning

confidence: 99%

Barriers to Advance Care Planning in Cancer, Heart Failure and Dementia Patients: A Focus Group Study on General Practitioners' Views and Experiences

et al. 2014

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BackgroundThe long-term and often lifelong relationship of general practitioners (GPs) with their patients is considered to make them the ideal initiators of advance care planning (ACP). However, in general the incidence of ACP discussions is low and ACP seems to occur more often for cancer patients than for those with dementia or heart failure.ObjectiveTo identify the barriers, from GPs' perspective, to initiating ACP and to gain insight into any differences in barriers between the trajectories of patients with cancer, heart failure and dementia.MethodFive focus groups were held with GPs (n = 36) in Flanders, Belgium. The focus group discussions were transcribed verbatim and analyzed using the method of constant comparative analysis.ResultsThree types of barriers were distinguished: barriers relating to the GP, to the patient and family and to the health care system. In cancer patients, a GP's lack of knowledge about treatment options and the lack of structural collaboration between the GP and specialist were expressed as barriers. Barriers that occured more often with heart failure and dementia were the lack of GP familiarity with the terminal phase, the lack of key moments to initiate ACP, the patient's lack of awareness of their diagnosis and prognosis and the fact that patients did not often initiate such discussions themselves. The future lack of decision-making capacity of dementia patients was reported by the GPs as a specific barrier for the initiation of ACP.ConclusionThe results of our study contribute to a better understanding of the factors hindering GPs in initiating ACP. Multiple barriers need to be overcome, of which many can be addressed through the development of practical guidelines and educational interventions.

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Older people dying with dementia: a nationwide study

Abstract: Several areas of end-of-life care provision could be improved. Early communication and exploration of wishes and appointment of proxy decision-makers are important components of an early palliative care approach which appears to be initiated too infrequently.

Cited by 38 publications

References 28 publications

Place of death and end-of-life transitions experienced by very old people with differing cognitive status: Retrospective analysis of a prospective population-based cohort aged 85 and over

Place of death and end-of-life transitions experienced by very old people with differing cognitive status: Retrospective analysis of a prospective population-based cohort aged 85 and over

Evaluation of Underlying Causes of Death in Patients with Dementia to Support Targeted Advance Care Planning

Barriers to Advance Care Planning in Cancer, Heart Failure and Dementia Patients: A Focus Group Study on General Practitioners' Views and Experiences

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