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Published in: BMC Neurology 1/2014

Open Access 01-12-2014 | Research article

Reversal of English trend towards hospital death in dementia: a population-based study of place of death and associated individual and regional factors, 2001–2010

Authors: Katherine E Sleeman, Yuen K Ho, Julia Verne, Wei Gao, Irene J Higginson

Published in: BMC Neurology | Issue 1/2014

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Abstract

Background

England has one of the highest rates of hospital death in dementia in Europe. How this has changed over time is unknown. This study aimed to analyse temporal trends in place of death in dementia over a recent ten year period.

Methods

Population-based study linking Office for National Statistics mortality data with regional variables, in England 2001–2010. Participants were adults aged over 60 with a death certificate mention of dementia. Multivariable Poisson regression was used to determine the proportion ratio (PR) for death in care home (1) and home/hospice (1) compared to hospital (0). Explanatory variables included individual factors (age, gender, marital status, underlying cause of death), and regional variables derived at area level (deprivation, care home bed provision, urbanisation).

Results

388,899 deaths were included. Most people died in care homes (55.3%) or hospitals (39.6%). A pattern of increasing hospital deaths reversed in 2006, with a subsequent decrease in hospital deaths (−0.93% per year, 95% CI −1.08 to −0.79 p < 0.001), and an increase in care home deaths (0.60% per year, 95% CI 0.45 to 0.75 p < 0.001). Care home death was more likely with older age (PR 1.11, 1.10 to 1.13), and in areas with greater care home bed provision (PR 1.82, 1.79 to 1.85) and affluence (PR 1.29, 1.26 to 1.31). Few patients died at home (4.8%) or hospice (0.3%). Home/hospice death was more likely in affluent areas (PR 1.23, 1.18 to 1.29), for women (PR 1.61, 1.56 to 1.65), and for those with cancer as underlying cause of death (PR 1.84, 1.77 to 1.91), and less likely in the unmarried (PRs 0.51 to 0.66).

Conclusions

Two in five people with dementia die in hospital. However, the trend towards increasing hospital deaths has reversed, and care home bed provision is key to sustain this. Home and hospice deaths are rare. Initiatives which aim to support the end of life preferences for people with dementia should be investigated.
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Literature
1.
go back to reference Friedrich MJ: Dementia should be a priority. JAMA. 2012, 307 (19): 2017-2017. Friedrich MJ: Dementia should be a priority. JAMA. 2012, 307 (19): 2017-2017.
2.
go back to reference World Health Organisation: Dementia: A Public Health Priority. 2012, Geneva: World Health Organisation World Health Organisation: Dementia: A Public Health Priority. 2012, Geneva: World Health Organisation
3.
go back to reference Hurd MD, Martorell P, Delavande A, Mullen KJ, Langa KM: Monetary costs of dementia in the United States. N Engl J Med. 2013, 368 (14): 1326-1334. 10.1056/NEJMsa1204629.CrossRefPubMedPubMedCentral Hurd MD, Martorell P, Delavande A, Mullen KJ, Langa KM: Monetary costs of dementia in the United States. N Engl J Med. 2013, 368 (14): 1326-1334. 10.1056/NEJMsa1204629.CrossRefPubMedPubMedCentral
4.
go back to reference Mitchell SL, Kiely DK, Hamel MB: Dying with advanced dementia in the nursing home. Arch Intern Med. 2004, 164 (3): 321-326. 10.1001/archinte.164.3.321.CrossRefPubMed Mitchell SL, Kiely DK, Hamel MB: Dying with advanced dementia in the nursing home. Arch Intern Med. 2004, 164 (3): 321-326. 10.1001/archinte.164.3.321.CrossRefPubMed
5.
go back to reference Wolfson C, Wolfson DB, Asgharian M, M’Lan CE, Ostbye T, Rockwood K, Hogan DB, Clinical Progression of Dementia Study G: A reevaluation of the duration of survival after the onset of dementia. N Engl J Med. 2001, 344 (15): 1111-1116. 10.1056/NEJM200104123441501.CrossRefPubMed Wolfson C, Wolfson DB, Asgharian M, M’Lan CE, Ostbye T, Rockwood K, Hogan DB, Clinical Progression of Dementia Study G: A reevaluation of the duration of survival after the onset of dementia. N Engl J Med. 2001, 344 (15): 1111-1116. 10.1056/NEJM200104123441501.CrossRefPubMed
6.
go back to reference Xie J, Brayne C, Matthews FE, Medical Research Council Cognitive Function and Ageing Study Collaborators: Survival times in people with dementia: analysis from population based cohort study with 14 year follow-up. BMJ. 2008, 336 (7638): 258-262. 10.1136/bmj.39433.616678.25.CrossRefPubMedPubMedCentral Xie J, Brayne C, Matthews FE, Medical Research Council Cognitive Function and Ageing Study Collaborators: Survival times in people with dementia: analysis from population based cohort study with 14 year follow-up. BMJ. 2008, 336 (7638): 258-262. 10.1136/bmj.39433.616678.25.CrossRefPubMedPubMedCentral
7.
go back to reference Mitchell SL, Teno JM, Kiely DK, Shaffer ML, Jones RN, Prigerson HG, Volicer L, Givens JL, Hamel MB: The clinical course of advanced dementia. N Engl J Med. 2009, 361 (16): 1529-1538. 10.1056/NEJMoa0902234.CrossRefPubMedPubMedCentral Mitchell SL, Teno JM, Kiely DK, Shaffer ML, Jones RN, Prigerson HG, Volicer L, Givens JL, Hamel MB: The clinical course of advanced dementia. N Engl J Med. 2009, 361 (16): 1529-1538. 10.1056/NEJMoa0902234.CrossRefPubMedPubMedCentral
8.
go back to reference Sachs GA, Shega JW, Cox-Hayley D: Barriers to excellent end-of-life care for patients with dementia. J Gen Intern Med. 2004, 19 (10): 1057-1063. 10.1111/j.1525-1497.2004.30329.x.CrossRefPubMedPubMedCentral Sachs GA, Shega JW, Cox-Hayley D: Barriers to excellent end-of-life care for patients with dementia. J Gen Intern Med. 2004, 19 (10): 1057-1063. 10.1111/j.1525-1497.2004.30329.x.CrossRefPubMedPubMedCentral
9.
go back to reference Teno JM, Clarridge BR, Casey V, Welch LC, Wetle T, Shield R, Mor V: Family perspectives on end-of-life care at the last place of care. JAMA. 2004, 291 (1): 88-93. 10.1001/jama.291.1.88.CrossRefPubMed Teno JM, Clarridge BR, Casey V, Welch LC, Wetle T, Shield R, Mor V: Family perspectives on end-of-life care at the last place of care. JAMA. 2004, 291 (1): 88-93. 10.1001/jama.291.1.88.CrossRefPubMed
10.
go back to reference Harrison Dening K, Greenish W, Jones L, Sampson EL: Advance care planning for people with dementia: a review. Int Psychogeriatr. 2011, 23 (10): 1535-1551. 10.1017/S1041610211001608.CrossRef Harrison Dening K, Greenish W, Jones L, Sampson EL: Advance care planning for people with dementia: a review. Int Psychogeriatr. 2011, 23 (10): 1535-1551. 10.1017/S1041610211001608.CrossRef
11.
go back to reference Goldfeld KS, Stevenson DG, Hamel MB, Mitchell SL: Medicare expenditures among nursing home residents with advanced dementia. Arch Intern Med. 2011, 171 (9): 824-830.CrossRefPubMedPubMedCentral Goldfeld KS, Stevenson DG, Hamel MB, Mitchell SL: Medicare expenditures among nursing home residents with advanced dementia. Arch Intern Med. 2011, 171 (9): 824-830.CrossRefPubMedPubMedCentral
12.
go back to reference Teno JM, Gozalo PL, Bynum JP, Leland NE, Miller SC, Morden NE, Scupp T, Goodman DC, Mor V: Change in end-of-life care for Medicare beneficiaries: site of death, place of care, and health care transitions in 2000, 2005, and 2009. JAMA. 2013, 309 (5): 470-477. 10.1001/jama.2012.207624.CrossRefPubMedPubMedCentral Teno JM, Gozalo PL, Bynum JP, Leland NE, Miller SC, Morden NE, Scupp T, Goodman DC, Mor V: Change in end-of-life care for Medicare beneficiaries: site of death, place of care, and health care transitions in 2000, 2005, and 2009. JAMA. 2013, 309 (5): 470-477. 10.1001/jama.2012.207624.CrossRefPubMedPubMedCentral
13.
go back to reference Gao W, Ho YK, Verne J, Glickman M, Higginson IJ: project GUIDE_Care: Changing patterns in place of cancer death in England: a population-based study. PLoS Med/Public Libr Sci. 2013, 10 (3): e1001410- Gao W, Ho YK, Verne J, Glickman M, Higginson IJ: project GUIDE_Care: Changing patterns in place of cancer death in England: a population-based study. PLoS Med/Public Libr Sci. 2013, 10 (3): e1001410-
14.
go back to reference Sampson EL, Burns A, Richards M: Improving end-of-life care for people with dementia. Br J Psychiatry. 2011, 199 (5): 357-359. 10.1192/bjp.bp.111.097030.CrossRefPubMed Sampson EL, Burns A, Richards M: Improving end-of-life care for people with dementia. Br J Psychiatry. 2011, 199 (5): 357-359. 10.1192/bjp.bp.111.097030.CrossRefPubMed
15.
go back to reference Houttekier D, Cohen J, Bilsen J, Addington-Hall J, Onwuteaka-Philipsen BD, Deliens L: Place of death of older persons with dementia. A study in five European countries. J Am Geriatr Soc. 2010, 58 (4): 751-756. 10.1111/j.1532-5415.2010.02771.x.CrossRefPubMed Houttekier D, Cohen J, Bilsen J, Addington-Hall J, Onwuteaka-Philipsen BD, Deliens L: Place of death of older persons with dementia. A study in five European countries. J Am Geriatr Soc. 2010, 58 (4): 751-756. 10.1111/j.1532-5415.2010.02771.x.CrossRefPubMed
16.
go back to reference National End of Life Care Intelligence Network: Deaths From Alzheimer’s Disease, Dementia And Senility In England. 2010, England: National End of Life Care Intelligence Network National End of Life Care Intelligence Network: Deaths From Alzheimer’s Disease, Dementia And Senility In England. 2010, England: National End of Life Care Intelligence Network
17.
go back to reference Sleeman KE, Ho YK, Verne J, Glickman M, Silber E, Gao W, Higginson IJ: Place of death, and its relation with underlying cause of death, in Parkinson’s disease, motor neurone disease, and multiple sclerosis: a population-based study. Palliat Med. 2013, 27 (9): 840-846. 10.1177/0269216313490436.CrossRefPubMed Sleeman KE, Ho YK, Verne J, Glickman M, Silber E, Gao W, Higginson IJ: Place of death, and its relation with underlying cause of death, in Parkinson’s disease, motor neurone disease, and multiple sclerosis: a population-based study. Palliat Med. 2013, 27 (9): 840-846. 10.1177/0269216313490436.CrossRefPubMed
18.
go back to reference Ferri CP, Prince M, Brayne C, Brodaty H, Fratiglioni L, Ganguli M, Hall K, Hasegawa K, Hendrie H, Huang Y, Jorm A, Mathers C, Menezes PR, Rimmer E, Scazufca M, Alzheimer's Disease International: Global prevalence of dementia: a Delphi consensus study. Lancet. 2005, 366 (9503): 2112-2117. 10.1016/S0140-6736(05)67889-0.CrossRefPubMedPubMedCentral Ferri CP, Prince M, Brayne C, Brodaty H, Fratiglioni L, Ganguli M, Hall K, Hasegawa K, Hendrie H, Huang Y, Jorm A, Mathers C, Menezes PR, Rimmer E, Scazufca M, Alzheimer's Disease International: Global prevalence of dementia: a Delphi consensus study. Lancet. 2005, 366 (9503): 2112-2117. 10.1016/S0140-6736(05)67889-0.CrossRefPubMedPubMedCentral
19.
go back to reference Mitchell SL, Teno JM, Miller SC, Mor V: A national study of the location of death for older persons with dementia. [Erratum appears in J Am Geriatr Soc. 2005 Apr;53(4):741]. J Am Geriatr Soc. 2005, 53 (2): 299-305. 10.1111/j.1532-5415.2005.53118.x.CrossRefPubMed Mitchell SL, Teno JM, Miller SC, Mor V: A national study of the location of death for older persons with dementia. [Erratum appears in J Am Geriatr Soc. 2005 Apr;53(4):741]. J Am Geriatr Soc. 2005, 53 (2): 299-305. 10.1111/j.1532-5415.2005.53118.x.CrossRefPubMed
20.
go back to reference Payne RA, Abel GA: UK indices of multiple deprivation - a way to make comparisons across constituent countries easier. Health Stat Q. 2012, 53: 22-37. Payne RA, Abel GA: UK indices of multiple deprivation - a way to make comparisons across constituent countries easier. Health Stat Q. 2012, 53: 22-37.
21.
go back to reference Kyte L, Wells C: Variations in life expectancy between rural and urban areas of England, 2001–07. Health Stat Q. 2010, 46: 25-50.CrossRefPubMed Kyte L, Wells C: Variations in life expectancy between rural and urban areas of England, 2001–07. Health Stat Q. 2010, 46: 25-50.CrossRefPubMed
24.
go back to reference Care Quality Commission: The Adult Social Care Market and the Quality of Services. 2010, England: Care Quality Commission Care Quality Commission: The Adult Social Care Market and the Quality of Services. 2010, England: Care Quality Commission
25.
go back to reference National End of Life Care Intelligence Network: Variations in Place of Death in England. 2010, England: National End of Life Care Intelligence Network National End of Life Care Intelligence Network: Variations in Place of Death in England. 2010, England: National End of Life Care Intelligence Network
26.
go back to reference Shega JW, Hougham GW, Stocking CB, Cox-Hayley D, Sachs GA: Patients dying with dementia: experience at the end of life and impact of hospice care. J Pain Symptom Manage. 2008, 35 (5): 499-507. 10.1016/j.jpainsymman.2007.06.011.CrossRefPubMed Shega JW, Hougham GW, Stocking CB, Cox-Hayley D, Sachs GA: Patients dying with dementia: experience at the end of life and impact of hospice care. J Pain Symptom Manage. 2008, 35 (5): 499-507. 10.1016/j.jpainsymman.2007.06.011.CrossRefPubMed
27.
go back to reference Lawrence V, Samsi K, Murray J, Harari D, Banerjee S: Dying well with dementia: qualitative examination of end-of-life care. Br J Psychiatry. 2011, 199: 417-422. 10.1192/bjp.bp.111.093989.CrossRefPubMed Lawrence V, Samsi K, Murray J, Harari D, Banerjee S: Dying well with dementia: qualitative examination of end-of-life care. Br J Psychiatry. 2011, 199: 417-422. 10.1192/bjp.bp.111.093989.CrossRefPubMed
30.
go back to reference Gomes B, Higginson IJ: Factors influencing death at home in terminally ill patients with cancer: systematic review. BMJ. 2006, 332 (7540): 515-521. 10.1136/bmj.38740.614954.55.CrossRefPubMedPubMedCentral Gomes B, Higginson IJ: Factors influencing death at home in terminally ill patients with cancer: systematic review. BMJ. 2006, 332 (7540): 515-521. 10.1136/bmj.38740.614954.55.CrossRefPubMedPubMedCentral
31.
go back to reference Griffiths C, Rooney C: Trends in mortality from Alzheimer’s disease, Parkinson’s disease and dementia, England and Wales, 1979–2004. Health Stat Q. 2006, 6-14. 30 Griffiths C, Rooney C: Trends in mortality from Alzheimer’s disease, Parkinson’s disease and dementia, England and Wales, 1979–2004. Health Stat Q. 2006, 6-14. 30
32.
go back to reference Wachterman M, Kiely DK, Mitchell SL: Reporting dementia on the death certificates of nursing home residents dying with end-stage dementia. JAMA. 2008, 300 (22): 2608-2610.PubMedPubMedCentral Wachterman M, Kiely DK, Mitchell SL: Reporting dementia on the death certificates of nursing home residents dying with end-stage dementia. JAMA. 2008, 300 (22): 2608-2610.PubMedPubMedCentral
33.
go back to reference Ganguli M, Rodriguez EG: Reporting of dementia on death certificates: a community study. J Am Geriatr Soc. 1999, 47 (7): 842-849.CrossRefPubMed Ganguli M, Rodriguez EG: Reporting of dementia on death certificates: a community study. J Am Geriatr Soc. 1999, 47 (7): 842-849.CrossRefPubMed
34.
go back to reference Gomes B, Calanzani N, Curiale V, McCrone P, Higginson IJ: Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers. Cochrane Database Syst Rev. 2013, 6: CD007760-PubMed Gomes B, Calanzani N, Curiale V, McCrone P, Higginson IJ: Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers. Cochrane Database Syst Rev. 2013, 6: CD007760-PubMed
35.
go back to reference Sampson EL, Ritchie CW, Lai R, Raven PW, Blanchard MR: A systematic review of the scientific evidence for the efficacy of a palliative care approach in advanced dementia. Int Psychogeriatr. 2005, 17 (1): 31-40. 10.1017/S1041610205001018.CrossRefPubMed Sampson EL, Ritchie CW, Lai R, Raven PW, Blanchard MR: A systematic review of the scientific evidence for the efficacy of a palliative care approach in advanced dementia. Int Psychogeriatr. 2005, 17 (1): 31-40. 10.1017/S1041610205001018.CrossRefPubMed
Metadata
Title
Reversal of English trend towards hospital death in dementia: a population-based study of place of death and associated individual and regional factors, 2001–2010
Authors
Katherine E Sleeman
Yuen K Ho
Julia Verne
Wei Gao
Irene J Higginson
Publication date
01-12-2014
Publisher
BioMed Central
Published in
BMC Neurology / Issue 1/2014
Electronic ISSN: 1471-2377
DOI
https://doi.org/10.1186/1471-2377-14-59

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