Original article

Dying With Dementia

Symptom Burden, Quality of Care, and Place of Death

Dtsch Arztebl Int 2013; 110(12): 195-202. DOI: 10.3238/arztebl.2013.0195

Escobar Pinzon, L C; Claus, M; Perrar, K M; Zepf, K I; Letzel, S; Weber, M

Background: No detailed information has been available until now about the care setting, circumstances and place of death, symptom burden, and quality of care of persons with end-stage dementia in Germany.

Methods: This cross-sectional study is based on a random sample of 5000 persons who died in the period from 25 May to 24 August 2008 in the German federal state of Rhineland-Palatinate. Their surviving relatives were contacted and asked to participate in a questionnaire survey. Data were obtained in this way for 310 persons with dementia and 931 persons without dementia.

Results: 42.4% of the persons with dementia died at home. Most patients and their relatives preferred death at home to death anywhere else (94.8% of patients, 77.5% of relatives). Persons living with at least one relative were more likely to die at home (adjusted odds ratio [aOR] 4.69, 95% confidence interval [CI] 2.71–8.11). According to information supplied by the relatives, the overwhelming majority of patients suffered, two days before death, from moderate to severe weakness (94.9%), fatigue (94.4%), disorientation/confusion (86.9%), and appetite loss (86.4%). Other common symptoms were anxiety (61.0%), tension (59.9%), dyspnea (56.7%), and pain (52.5%). The relatives were critical of the quality of care on standard hospital wards, citing the limited temporal availability of staff and limited emotional support.

Conclusion: These data indicate the high symptom burden of persons with dementia in Germany at the end of their lives. They underscore the need for proper palliative care in all of the settings where persons with dementia die. Specialized in- and outpatient palliative care should not be offered only to patients with cancer, but should rather be made available to all who need it.

LNSLNS

Advanced dementia is increasingly being regarded as a terminal disease (1, 2). Studies in English-speaking countries have led to the conclusion that the palliative care of patients with dementia at the end of their lives is now inadequately adapted to their special needs, not only for those dying at home, but also for those dying in hospitals and nursing homes (3, 4). Insufficient symptom control, failure to recognize that the patient is dying, and unnecessary and stressful interventions such as artificial nutrition or physical restraints are common (5, 6). Most of the pertinent studies in Germany have looked only at the symptom burden of persons dying of cancer in palliative care facilities (7, 8). In this article, we make use of data from the EPACS (Establishment of Hospice and Palliative Care Services in Germany) study (912) to assemble a more complete picture of the current situation of dying persons with dementia in Germany. We devote special attention to the patients’ preferred and actual places of death, symptom prevalence, and quality of care. Data on non-dementia patients are included for comparison.

Methods

Data acquisition

The method of data acquisition has been described previously (11).The EPACS cross-sectional study was conducted from September 2008 to January 2009. A random sample of data was taken concerning 5000 persons who died in the period from 25 May to 24 August 2008 and who were officially registered as residents in one of the communities of the state of Rhineland-Palatinate. Primary residence in the state at the time of death was a criterion for inclusion in the study. Letters addressed to the deceased persons’ relatives were sent to their former addresses; in these letters, the relatives were asked to participate in the study by filling out the questionnaire. The study was approved both by the Ethics Committee of the Rhineland-Palatinate State Medical Association and by the designated state official in charge of protecting the confidentiality of personal data.

Questionnaire

A questionnaire was used to determine the deceased persons’ sociodemographic characteristics, underlying diseases, preferred and actual place of death, symptom burden, and quality of care in both in- and outpatient settings.

Construction of variables

To determine the deceased persons’ underlying diseases, their relatives were asked what diseases they had suffered from in the four weeks leading up to death.

To determine the place of death, the relatives were asked, “Where did your relative die?” The possible answers were “at home,” “on an intensive care unit of a hospital,” “on a palliative care unit of a hospital,” “on a standard hospital ward,” “in a nursing home,” “in a hospice,” and “elsewhere.” Similarly, the following questions were asked to determine the place of death that patients had wanted for themselves and that their relatives had wanted for them: “Did your deceased relative ever say where he or she wanted to die? If so, where?” “What place of death would you have wanted for your deceased relative?” The possible answers to these questions were “at home,” “in the hospital,” “on a palliative care unit of a hospital,” “in a nursing home,” “in a hospice,” and “elsewhere.” The two places of death “on a palliative care unit of a hospital” and “in a hospice” were combined as “in a palliative care facility.”

To determine the burden of symptoms, the relatives were asked to say which of a total of 16 symptoms their deceased relative had suffered from in the two days before death, and to what degree. The answer categories were “not at all,” “mild,” “moderate,” and “severe.” The items were taken from the symptom and problem checklist of the Hospice and Palliative Care Evaluation (Hospiz- und Palliativerhebung, HOPE). This is a standardized documentation form used in palliative care facilities to collect information on both cancer patients and non-cancer patients; since its creation by an interdisciplinary working group in 1996, it has been used in a number of studies in Germany (8, 1315).

To assess the quality of care, the relatives were asked to agree or disagree with statements about the care provided by physicians and nurses in different settings.

Statistical analysis

All statistical analyses were performed with the STATA/IC 10.1 program. Disease-specific differences between persons with and those without dementia were studied with chi-square and Mann-Whitney U tests. p<0.05 was used as the criterion for statistical significance. Multivariate logistic regression was used to identify factors influencing where persons with dementia die. For the model, we chose automatic backward selection, with p<0.05 as the criterion for exclusion. The dependent variable took on the value “1” for death at home or “0” for death in any type of institution (hospital, nursing home, or palliative care facility).

Results

After the removal of redundant addresses from the random sample of 5000 deceased persons, 4967 questionnaires were sent, of which 3833 were delivered to the given address and 1134 were returned to sender. A total of 1378 questionnaires were filled out, yielding a response rate of 36.0% in relation to the questionnaires that were actually delivered or 27.7% in relation to those that were initially sent. 137 persons were excluded from the analysis because of a lack of data about their illness. The following analysis is based on data about 310 persons with and 931 persons without dementia.

Sociodemographic and health characteristics

The age-stratified prevalence of dementia in the sample was 4.4% (age 65–69), 9.5% (age 70–74), 15.6% (age 75–79), 33.5% (age 80–84), 42.0% (age 85–89), 49.6% (age 90–94), and 47.1% (age 95 and above). The sociodemographic and health characteristics of the sample, both as a whole and stratified by type of illness, are shown in Table 1.

Sociodemographic and health-related characteristics of the deceased, stratified by disease status
Sociodemographic and health-related characteristics of the deceased, stratified by disease status
Table 1
Sociodemographic and health-related characteristics of the deceased, stratified by disease status

Persons with dementia, compared to persons without dementia, were about ten years older on average and were more likely to be female (65.8% versus 52.2%) and widowed (61.3 % versus 37.0%). Persons with dementia were less likely to be living in the same household with one or more relatives (44.2% versus 59.8%) and more likely to be receiving nursing care at level II (41.0% versus 33.2%) or level III (36.1% versus 10.6%). Moreover, the relatives of people with dementia were more likely to state that the costs of nursing and treatment were a major financial burden (39.7% versus 25.7%).

Most of the questionnaires were filled out by the children (62.3%) or spouses (16.1%) of the deceased. The surviving relatives of patients with dementia were 59 years old on average, and mostly female (62.3%).

Preferred and actual place of death

The place of death of persons with and without dementia is shown in Figure 1. Persons with dementia most often died at home (42.4%), followed by in nursing homes (26.9%) and in hospitals (standard hospital ward 20.4% + intensive care unit 5.8% = 26.2%). Persons without dementia most often died in the hospital (standard hospital ward 26.7% + intensive care unit 15.9% = 42.6%); 35.8% died at home, and 10.0% died in a palliative care facility.

The place of death of persons with and without dementia
The place of death of persons with and without dementia
Figure 1
The place of death of persons with and without dementia

The relatives stated that 174 of the persons with dementia had expressed a preference for dying in a particular place, and that 94.8% of these persons had wanted to die at home. The corresponding percentage among persons without dementia was nearly the same (92.6% of 502 persons expressing a preference). Likewise, among the relatives who expressed a preference (249 relatives of persons with dementia and 673 relatives of persons without dementia), most said they had preferred that their relative should die at home (77.5% for persons with dementia, 81.3% for persons without dementia). The second place of death preferred by the relatives was the nursing home (14.9 %) for persons with dementia, and a palliative care facility (9.1%) for persons without dementia.

To determine the factors affecting the place of death, a multivariate logistic regression analysis was performed. The results are displayed in Table 2.

Multivariate logistic regression analysis to determine factors affecting whether persons with dementia die at home (= 1) or in an institution (= 0)
Multivariate logistic regression analysis to determine factors affecting whether persons with dementia die at home (= 1) or in an institution (= 0)
Table 2
Multivariate logistic regression analysis to determine factors affecting whether persons with dementia die at home (= 1) or in an institution (= 0)

The single factor making death at home most likely was neither a disease-related feature nor a patient-related one, but rather living together with at least one relative (adjusted odds ratio [aOR] 4.69, 95% confidence interval [CI] 2.71–8.11).

Symptom prevalences

The prevalences of various symptoms among persons with and without dementia two days before death are shown in Figure 2. With respect to physical symptoms, the relatives stated that the persons with dementia had suffered most commonly from moderate to severe weakness (94.9%), followed by fatigue (94.4%) and appetite loss (86.4%). Further common symptoms were dyspnea (56.7%) and pain (52.5%). Likewise, in persons without dementia, the common symptoms included weakness (92.8%), fatigue (90.3%), and appetite loss (85.5%). As for psychological symptoms, 86.9% of the persons with dementia were moderately to severely disoriented, while 61.0% suffered from anxiety, 59.9% from tension, and 45.9% from depressiveness. The more common psychological symptoms in persons without dementia were anxiety (61.4%), tension (57.8%), and depressiveness (44.1%).

Moderate to severe physical, psychological and social burden of persons with and without dementia two days before death
Moderate to severe physical, psychological and social burden of persons with and without dementia two days before death
Figure 2
Moderate to severe physical, psychological and social burden of persons with and without dementia two days before death

As for social burden, the overwhelming majority of relatives of persons with or without dementia (88.8% and 86.0%, respectively) said that the deceased person had a moderate or severe need for help in daily activities in the last two days before death. The persons with dementia were significantly more likely than the ones without dementia to have had medical problems leading to a greater need for nursing care, such as decubitus ulcers or disorientation/confusion, and were more likely to have had problems with organization of care.

The relatives’ assessment of the quality of care

The quality of care was assessed by the relatives as shown in Table 3. The relatives were asked to judge the care provided by the treating physicians and nurses in the facilities where the deceased had been treated in the four weeks leading up to death.

Assessment of physicians and nurses in various settings by the relatives of persons with dementia and by the relatives of persons without dementia (the latter in parentheses)
Assessment of physicians and nurses in various settings by the relatives of persons with dementia and by the relatives of persons without dementia (the latter in parentheses)
Table 3
Assessment of physicians and nurses in various settings by the relatives of persons with dementia and by the relatives of persons without dementia (the latter in parentheses)

General satisfaction was greatest with treatment in the patient’s own home. Only slightly more than half of the relatives of persons with dementia were satisfied with their care in standard hospital wards. Most of the relatives considered the physicians competent but complained of deficiencies in temporal availability and emotional support. Fewer than half of the relatives of persons with dementia said that physicians in hospitals had taken enough time for the patient. Although physicians and nurses received similar ratings on many items, nurses were rated somewhat higher than physicians with respect to emotional support. The relatives of persons with dementia gave treatment in the hospital a worse rating than the relatives of patients without dementia did. There were a number of interesting differences between the ratings of treatment on standard hospital wards by the relatives of patients with and without dementia, even if most of these differences failed to reach statistical significance: overall satisfaction 50.6% versus 62.4% (p = 0.134), temporal availability of physicians 34.7% versus 49.5% (p = 0.070), temporal availability of nurses 40.8% versus 49.2% (p = 0.148), emotional support from physicians 32.7% versus 50.8% (p = 0.033).

Discussion

Main findings

The purpose of this article was to describe the circumstances in which persons with dementia die in Germany. Many of the persons with dementia in this study (42.4%) died at home—in fact, persons with dementia were found to be more likely to die at home than persons without dementia (35.8%). In comparison with studies from other countries, the percentage of persons with dementia dying at home in Germany seems extraordinarily high: In the USA, for example, a study based on death certificates that named dementia as a cause of death revealed that 82.5% of persons with dementia died in a nursing home or hospital (16). In another study based on death certificates in five European countries (Belgium, the Netherlands, England, Wales, and Scotland), the corresponding percentages ranged from 88.6% to 94.9% (17). Overall, 77.5% of relatives of persons with dementia expressed a preference for death at home. This is an impressively large fraction in view of the marked burden that dementia can place on a family and the long duration of care. In contrast, only a relatively small percentage of persons with dementia die in special palliative care facilities.

As expected, a significantly higher percentage of persons with dementia than persons without dementia were moderately or severely disoriented in the last few days before they died, but the symptom burdens of persons with and without dementia were otherwise quite similar. It is noteworthy that symptoms traditionally associated mainly with end-stage cancer, such as pain and dyspnea, were also common among persons with dementia in their last days. These findings accord with recent research showing that physical symptoms are common among persons with dementia and even more common in the time leading up to death (18, 19). This is particularly true for pain, from which more than half of all persons with dementia suffered in moderate to severe intensity two days before they die. Lack of recognition that the patient is in pain and inadequate administration of analgesic drugs are typical sources of undertreatment for dying persons with dementia (2022).

Care in the patient’s own home and in the nursing home was judged to be the best. It is noteworthy that the relatives drew a clear distinction between care at home or in a nursing home on one side, and care in a standard hospital ward on the other. Their critical judgment of care in standard hospital wards is particularly worrisome because this was where 20.4% of the persons with dementia died. Possibly, the relatively poor rating of the standard hospital wards was accountable, at least in part, to increasing staff workload (23). The resulting lack of time could have particularly negative consequences for the time-consuming care of persons with dementia in the unfamiliar hospital environment. Advanced dementia is now increasingly considered a terminal illness (18, 19); in view of this fact and the structural problems besetting standard hospital wards, the findings of this study imply that measures ought to be taken to spare persons with dementia the stress of emergency hospitalization in the time just before death. One possibility would be to make ambulatory palliative services more broadly available, so that persons with advanced dementia would be covered as well. The legal basis for such a step can be found in §37b SGB V (Book V of the German Code of Social Law, which deals with statutory health-insurance coverage). The staff providing such services could also lend support with the ethical questions that inevitably arise in connection with complications such as infection or inadequate food intake. This, in turn, could lighten the burden of the physicians and nurses that provide basic medical care in the patient’s home and in nursing homes (24).

The limitations of this study

One major limitation of this study is that deceased persons were classified as having been demented on the basis of information supplied by their surviving relatives, rather than the findings of diagnostic tests that had been performed while they were alive. Perhaps some of the patients classified as demented had actually suffered from other diseases of old age whose manifestations can be confused with those of dementia. We can be reasonably confident, however, that most patients were given a diagnosis of dementia as part of the professional assessment of their need for nursing care, and that this diagnosis was then communicated to, and accepted by, the relatives. The age-stratified prevalence figures obtained here closely correspond to those obtained in a British study, which, like this one, assessed the prevalence of dementia shortly before death (25).

We cannot exclude sample bias as a potential source of error in the distribution of places of death for persons with dementia, as revealed by this study. Persons who die at home generally have at least one near relative who can provide informal care, and this (or these) same relative(s) would presumably be available to participate in studies such as EPACS by filling out questionnaires. Persons dying in institutions might have no such relative. Thus, persons with dementia who died at home may have been overrepresented in this study.

Further limitations include the response rate of 27.7%; potential bias because of the time elapsed since the events that the informants were asked to describe (recall bias); and the subjectivity of judgments of symptom burden, because of which the relatives’ notion of the symptoms suffered by the patients may well have differed from the perceptions of the patients themselves.

Overview

Persons with dementia often die under difficult conditions because the health-care system is ill-equipped to deal with their special needs (3). The data presented here illustrate some of the problems in this area in Germany today. A number of ways to give persons with dementia better care at the end of their lives by improving informational strategies, care organization, symptom monitoring and treatment, and support for surviving relatives have been described in detail by Förstl et al. and by Alzheimer Europe (26, 27). Further research on the implementation and assessment of these interventions is urgently needed. Persons with advanced dementia and related problems should be cared for by professionals with special competence in palliative medicine; geriatric psychiatrists and palliative-medicine specialists should work closely together with these persons’ family physicians to deliver the care they need.

Acknowledgement
The authors thank Fresenius Kabi Deutschland GmbH and the German Pharmaceutical Industry Federation (Bundesverband der Pharmazeutischen Industrie e. V., BPI) for their financial support of this study.

Conflict of interest statement
Dr. Escobar Pinzon, Mr. Claus, Dr. Zepf, Prof. Letzel. and Prof. Weber have recieved outside funding for this study from Fresenius Kabi Deutschland GmbH and the German Pharmaceutical Industry Federation. Prof. Weber has also received reimbursement of medical meeting participation fees and travel expenses from Nycomed.

Dr. Perrar states that he has no conflict of interest.

Manuscript submitted on 5 September 2012, revised version accepted on 21 December 2012.

Translated from the original German by Ethan Taub, M.D.

Corresponding author
Dr. rer. soc. Dipl.-Psych. Luis Carlos Escobar Pinzon
Institut für Arbeits-, Sozial- und Umweltmedizin
Universitätsmedizin der Johannes Gutenberg-Universität Mainz
Obere Zahlbacher Str. 67, 55131 Mainz, Germany
escobar@uni-mainz.de

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Institute of Occupational, Social and Environmental Medicine, University Medical Center of the Johannes Gutenberg University of Mainz: Dr. rer. soc. Dipl.-Psych. Escobar Pinzon, M.A. M.Sc. Claus, Dr. phil. Dipl.-Psych. Zepf, Prof. Dr. med. Dipl.-Ing. Letzel
Department of Palliative Medicine, University Hospital Cologne: Dr. med. Perrar
Interdisciplinary Palliative Care Unit, III. Department of Medicine, University Medical Center of the Johannes Gutenberg University of Mainz: Prof. Dr. med. Weber
The place of death of persons with and without dementia
The place of death of persons with and without dementia
Figure 1
The place of death of persons with and without dementia
Moderate to severe physical, psychological and social burden of persons with and without dementia two days before death
Moderate to severe physical, psychological and social burden of persons with and without dementia two days before death
Figure 2
Moderate to severe physical, psychological and social burden of persons with and without dementia two days before death
Key messages
Sociodemographic and health-related characteristics of the deceased, stratified by disease status
Sociodemographic and health-related characteristics of the deceased, stratified by disease status
Table 1
Sociodemographic and health-related characteristics of the deceased, stratified by disease status
Multivariate logistic regression analysis to determine factors affecting whether persons with dementia die at home (= 1) or in an institution (= 0)
Multivariate logistic regression analysis to determine factors affecting whether persons with dementia die at home (= 1) or in an institution (= 0)
Table 2
Multivariate logistic regression analysis to determine factors affecting whether persons with dementia die at home (= 1) or in an institution (= 0)
Assessment of physicians and nurses in various settings by the relatives of persons with dementia and by the relatives of persons without dementia (the latter in parentheses)
Assessment of physicians and nurses in various settings by the relatives of persons with dementia and by the relatives of persons without dementia (the latter in parentheses)
Table 3
Assessment of physicians and nurses in various settings by the relatives of persons with dementia and by the relatives of persons without dementia (the latter in parentheses)
1. Birch D, Stokoe D: Caring for people with end-stage dementia. Nurs Older People 2010; 22: 31–6. MEDLINE
2. Raji MA, Kuo YF, Freeman JL, Goodwin JS: Effect of a dementia diagnosis on survival of older patients after a diagnosis of breast, colon, or prostate cancer: implications for cancer care. Arch Intern Med 2008; 168: 2033–40. CrossRef MEDLINE
3. Aminoff BZ, Adunsky A: Dying dementia patients: too much suffering, too little palliation. Am J Hosp Palliat Care 2005; 22: 344–8. CrossRef MEDLINE
4. Mitchell SL, Morris JN, Park PS, Fries BE: Terminal care for persons with advanced dementia in the nursing home and home care settings. J Palliat Med 2004; 7: 808–16. CrossRef MEDLINE
5. Birch D, Draper J: A critical literature review exploring the challenges of delivering effective palliative care to older people with dementia. J Clin Nurs 2008; 17: 1144–63. CrossRef MEDLINE
6.Mitchell SL, Kiely DK, Hamel MB: Dying with advanced dementia in the nursing home. Arch Intern Med 2004; 164: 321–6. CrossRef MEDLINE
7. Radbruch L, Nauck F, Ostgathe C, et al.: What are the problems in palliative care? Results from a representative survey. Support Care Cancer 2003; 11: 442–51. CrossRef MEDLINE
8.Ostgathe C, Gaertner J, Kotterba M, et al.: Differential palliative care issues in patients with primary and secondary brain tumours. Support Care Cancer 2010; 18: 1157–63. CrossRef MEDLINE PubMed Central
9. Escobar Pinzon LC, Claus M, Zepf KI, Fischbeck S, Weber M: Symptom prevalence in the last days of life in Germany: The role of place of death. Am J Hosp Palliat Care 2012; 29: 431–7. CrossRef MEDLINE
10. Escobar Pinzon LC, Claus M, Zepf KI, Letzel S, Fischbeck S, Weber M: Preference for place of death in Germany. J Palliat Med 2011; 14: 1097–103. CrossRef MEDLINE
11. Escobar Pinzon LC, Münster E, Fischbeck S, et al.: End-of-life care in Germany: Study design, methods and first results of the EPACS study (Establishment of Hospice and Palliative Care Services in Germany). BMC Palliat Care 2010; 9: 16. CrossRef MEDLINE PubMed Central
12. Escobar Pinzon LC, Weber M, Claus M, et al.: Factors influencing place of death in Germany. J Pain Symptom Manage 2011; 41: 893–903. CrossRef MEDLINE
13. Radbruch L, Nauck F, Fuchs M, Neuwöhner K, Schulenberg D, Lindena G: What is palliative care in Germany? Results from a representative survey. J Pain Symptom Manage 2002; 23: 470–82. CrossRef MEDLINE
14. Ostgathe C, Alt-Epping B, Golla H, et al.: Non-cancer patients in specialized palliative care in Germany: what are the problems? Palliat Med 2011; 25: 148–52. CrossRef MEDLINE
15.Stiel S, Pollok A, Elsner F, et al.: Validation of the Symptom and Problem Checklist of the German Hospice and Palliative Care Evaluation (HOPE). J Pain Symptom Manage 2012; 43: 593–605. CrossRef MEDLINE
16. Mitchell SL, Teno JM, Miller SC, Mor V: A national study of the location of death for older persons with dementia. J Am Geriatr Soc 2005; 53: 299–305. CrossRef MEDLINE
17. 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: 751–6. CrossRef MEDLINE
18. Mitchell SL, Teno JM, Kiely DK, et al.: The clinical course of advanced dementia. N Engl J Med 2009; 361: 1529–38. CrossRef MEDLINE PubMed Central
19. Di Giulio P, Toscani F, Villani D, Brunelli C, Gentile S, Spadin P:
Dying with advanced dementia in long-term care geriatric institutions: a retrospective study. J Palliat Med 2008; 11: 1023–8. CrossRef MEDLINE
20. Zwakhalen SM, van der Steen JT, Najim MD: Which score most likely represents pain on the observational PAINAD pain scale for patients with dementia? J Am Med Dir Assoc 2012; 13: 384–9. CrossRef MEDLINE
21. Takai Y, Yamamoto-Mitani N, Okamoto Y, Koyama K, Honda A:
Literature review of pain prevalence among older residents of
nursing homes. Pain Manag Nurs 2010; 11: 209–23. CrossRef MEDLINE
22. Zilkens RR, Spilsbury K, Bruce DG, Semmens JB: Linkage of
hospital and death records increased identification of dementia cases and death rate estimates. Neuroepidemiology 2009; 32: 61–9. CrossRef MEDLINE
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