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Palliative care interventions in advanced dementia

  • Review
  • Intervention




Dementia is a chronic, progressive and ultimately fatal neurodegenerative disease. Advanced dementia is characterised by profound cognitive impairment, inability to communicate verbally and complete functional dependence. Usual care of people with advanced dementia is not underpinned universally by a palliative approach. Palliative care has focused traditionally on care of people with cancer but for more than a decade, there have been increased calls worldwide to extend palliative care services to include all people with life-limiting illnesses in need of specialist care, including people with dementia.


To assess the effect of palliative care interventions in advanced dementia and to report on the range of outcome measures used.

Search methods

We searched ALOIS, the Cochrane Dementia and Cognitive Improvement Group's Specialized Register on 4 February 2016. ALOIS contains records of clinical trials identified from monthly searches of several major healthcare databases, trial registries and grey literature sources. We ran additional searches across MEDLINE (OvidSP), Embase (OvidSP), PsycINFO (OvidSP), CINAHL (EBSCOhost), LILACS (BIREME), Web of Science Core Collection (ISI Web of Science), and the World Health Organization ICTRP trial portal to ensure that the searches were as comprehensive and as up-to-date as possible.

Selection criteria

We searched for randomised (RCT) and non-randomised controlled trials (nRCT), controlled before-and-after studies (CBA) and interrupted time series studies evaluating the impact of palliative care interventions for adults with dementia of any type, staged as advanced dementia by a recognised and validated tool. Participants could be people with advanced dementia, their family members, clinicians or paid care staff. We included clinical interventions and non-clinical interventions. Comparators were usual care or another palliative care intervention. We did not exclude studies on the basis of outcomes measured and recorded all outcomes measured in included studies.

Data collection and analysis

Two review authors independently assessed for inclusion all the potential studies we identified as a result of the search strategy. We resolved any disagreement through discussion or, when required, consulted with the rest of the review team. We independently extracted data and conducted assessment of methodological quality, using standard Cochrane methods.

Main results

We identified two studies of palliative care interventions for people with advanced dementia. We did not pool data due to the heterogeneity between the two trials in terms of the interventions and the settings. The two studies measured 31 different outcomes, yet they did not measure the same outcome. There are six ongoing studies that we expect to include in future versions of this review.

Both studies were at high risk of bias, in part because blinding was not possible. This and small sample sizes meant that the overall certainty of all the evidence was very low.

One individually randomised RCT (99 participants) evaluated the effect of a palliative care team for people with advanced dementia hospitalised for an acute illness. While this trial reported that a palliative care plan was more likely to be developed for participants in the intervention group (risk ratio (RR) 5.84, 95% confidence interval (CI) 1.37 to 25.02), the plan was only adopted for two participants, both in the intervention group, while in hospital. The palliative care plan was more likely to be available on discharge in the intervention group (RR 4.50, 95% CI 1.03 to 19.75). We found no evidence that the intervention affected mortality in hospital (RR 1.06, 95% CI 0.53 to 2.13), decisions to forgo cardiopulmonary resuscitation in hospital or the clinical care provided during hospital admission, but for the latter, event rates were low and the results were associated with a lot of uncertainty.

One cluster RCT (256 participants, each enrolled with a family carer) evaluated the effect of a decision aid on end-of-life feeding options on surrogate decision-makers of nursing home residents with advanced dementia. Data for 90 participants (35% of the original study) met the definition of advanced dementia for this review and were re-analysed for the purposes of the review. In this subset, intervention surrogates had lower scores for decisional conflict measured on the Decisional Conflict Scale (mean difference -0.30, 95% CI -0.61 to 0.01, reduction of 0.3 to 0.4 units considered meaningful) and were more likely than participants in the control group to discuss feeding options with a clinician (RR 1.57, 95% CI 0.93 to 2.64), but imprecision meant that there was significant uncertainty about both results.

Authors' conclusions

Very little high quality work has been completed exploring palliative care interventions in advanced dementia. There were only two included studies in this review, with variation in the interventions and in the settings that made it impossible to conduct a meta-analysis of data for any outcome. Thus, we conclude that there is insufficient evidence to assess the effect of palliative care interventions in advanced dementia. The fact that there are six ongoing studies at the time of this review indicates an increased interest in this area by researchers, which is welcome and needed.








2016年2月4日にALOIS, the Cochrane Dementiaおよび Cognitive Improvement Group’s Specialized Registerを検索した。ALOISは、いくつかの主要な医療データベース、試験登録および灰色文献源を毎月検索し同定された臨床試験の記録を含んでいる。加えて、検索を包括的あよび可能な限り最新のものとであることを確認するため、 MEDLINE (OvidSP), Embase (OvidSP), PsycINFO (OvidSP), CINAHL (EBSCOhost), LILACS (BIREME), Web of Science Core Collection (ISI Web of Science), および 世界保健機構ICTRP trial portalを検索した。


一般に認知され有効である手段で終末期認知症と分類された、あらゆるタイプの認知症を有する成人に対する緩和ケア介入の影響を評価したランダム化比較試験(RCT)、非ランダム比較試験(nRCT)、 前後比較対照試験(CBA)および分割時系列試験。 参加者は終末期認知症患者、家族、臨床医あるいは介護者とした。臨床的介入および非臨床的介入を含めた。通常のケアあるいは他の緩和ケア介入との比較とした。測定されたアウトカムによって研究を除外すること無く、同定された研究の全ての測定されたアウトカムを記録した。






患者個人ごとにランダム化を行った1件のRCT(参加者99名)が、急性疾患のため入院した終末期認知症患者への緩和ケアチームの有効性を評価した。この試験は、緩和ケアプランは介入群(リスク比[RR] 5.84、95%信頼区[CI] 1.37~25.02)の参加者のために開発された傾向が高いと報告しているが、このプランは、入院中、介入群の2名に導入されただけであった。緩和ケアプランは介入群(RR 4.50、95%CI 1.03~19.75)において、退院時に利用可能である傾向が高かった。介入が院内死亡率(RR 1.06, 95% CI 0.53~2.13)、心肺機能蘇生を諦める決定、あるいは入院時に行われた臨床的ケアに影響を示したエビデンスは認められなかった。後者については、イベント率は低く、結果は多くの不確実性を伴っていた。

1件のクラスタ-RCT(参加者256名、家族介護者にそれぞれ登録) が、終末期認知症を有する介護施設入居者の代理意思決定者において、終末期の栄養補給法の選択の意思決定援助に対する影響を評価した。90名の参加者(元の研究の35%)に関するデータが、本レビューの終末期認知症の定義を満たし、レビューの目的に対し再解析された。 この部分集団では、介入代理人は 意思決定の葛藤尺度(the Decisional Conflict Scale;DCS) において測定された決定の葛藤へのスコアが低く(平均差 -0.30, 95%CI -0.61~0.01, *意義ある差の効果0.3~0.4)、臨床医と栄養補給選択肢を話し合った可能性が対照群の参加者(RR 1.57, 95%CI 0.93~2.64)より高い傾向にあったが、両方の結果について重要な不確実性が認められた。




《実施組織》ウォルトンみちよ翻訳 渡辺範雄監訳 [2017.6.28]《注意》この日本語訳は、臨床医、疫学研究者などによる翻訳のチェックを受けて公開していますが、訳語の間違いなどお気づきの点がございましたら、コクラン日本支部までご連絡ください。なお、2013年6月からコクラン・ライブラリーのNew review、Updated reviewとも日単位で更新されています。最新版の日本語訳を掲載するよう努めておりますが、タイム・ラグが生じている場合もあります。ご利用に際しては、最新版(英語版)の内容をご確認ください。 《CD011513》

Plain language summary

Palliative care for people with advanced dementia

Review question

In this research, we wanted to see if palliative care helps people with advanced dementia or helps their family or carers. We also wanted to describe how researchers tried to measure the effect of palliative care.


People with advanced dementia have serious memory problems and have problems making simple decisions. They are usually no longer able to communicate by talking. They need a lot of help from their carers. People with advanced dementia can live for a long time. It is very hard to say exactly how long a person with advanced dementia will live.

Palliative care (or end-of-life care) is a particular way of caring for people who have diseases that cannot be cured. The main aims of palliative care are to reduce pain and to maintain the best possible quality of life as death approaches. Palliative care is used a lot with people with cancer but is not used much for people with advanced dementia.

Study characteristics

We examined the research published up to January 2016. We found only two suitable studies (189 people), both from the US. We also found six studies that were underway but the results were not yet published.

Key results

One study found that having a small team of doctors and nurses trained in palliative care made little difference to how people with advanced dementia were treated while in hospital. But, having this special team meant that more people had a palliative care plan when they were discharged from hospital. The other study measured if giving written information to relatives explaining the different methods that can be used to feed people with advanced dementia helped either the relatives or the person. This study found that giving relatives this information made it a little easier for relatives to make decisions about what methods would be used to feed the person with dementia.

Certainty of evidence

We only found two studies and the two palliative care methods in these studies were very different. We cannot be very certain about how accurate either of these results reported here are, partly because only a small number of people took part in the studies. So from these studies, it is hard to be sure whether palliative care makes a difference to people with advanced dementia.

Final thoughts

Little research has been done about people with advanced dementia, often because of ethical concerns. However, although it is hard to do research with people with dementia, more well-designed studies are required to work out how palliative care can be used best in this special population.

Резюме на простом языке

Паллиативная помощь для людей с прогрессирующей деменцией (слабоумием).

Вопрос обзора

В этом исследовании мы хотели узнать, помогает ли паллиативная помощь людям с прогрессирующей деменцией или помогает ли она их семьям или лицам, осуществляющим уход. Мы также хотели описать, как исследователи попытались измерить/оценить эффект паллиативной помощи.


Люди с прогрессирующей деменцией имеют серьезные проблемы с памятью и принятием простых решений. Они обычно не в состоянии общаться и разговаривать. Они нуждаются в существенной помощи со стороны лиц, ухаживающих за ними. Люди с прогрессирующей деменцией могут жить достаточно долго. Однако, очень трудно сказать, сколько действительно сможет прожить человек с прогрессирующей деменцией.

Паллиативная помощь (или помощь/уход в конце жизни) представляет собой особый способ ухода за людьми с неизлечимыми заболеваниями. Основными целями паллиативной помощи являются уменьшение боли и поддержание максимально возможного уровня качества жизни по мере приближения смерти. Паллиативной помощью пользуются многие люди с раком, но в достаточной степени ее не применяют в отношении людей с прогрессирующей деменцией (слабоумием).

Характеристика исследований

Мы рассмотрели исследования, опубликованные на январь 2016 года. Мы нашли только два подходящих исследования (189 человек), оба из США. Мы также обнаружили шесть исследований, которые были на стадии завершения, но результаты еще не были опубликованными.

Основные результаты

Одно исследование показало, что оказание паллиативной помощи небольшой командой обученных врачей и медсестер мало повлияло на лечение людей с прогрессирующей деменцией во время их пребывания в стационаре. Но, оказание паллиативной помощи с помощью специальной команды означало, что для большего числа людей была запланирована паллиативная помощь после выписки из стационара. В другом исследовании изучали, помогает ли предоставление родственникам письменной информации с разъяснениями различных способов кормления людей с прогрессирующей деменцией, как самим родственникам, так и людям с деменцией. Это исследование показало, что предоставление родственникам такой информации немного облегчило им принимать решения в отношении выбора способа кормления человека с деменцией.

Уверенность в доказательствах

Мы нашли только два исследования, и два метода паллиативной помощи в этих исследованиях были очень разными. Мы не можем быть уверены в том, насколько точны результаты, представленные здесь, отчасти потому, что в этих исследованиях принимали участие небольшое число людей. Поэтому, исходя из этих исследований, трудно быть уверенными в отношении того, оказывает ли паллиативная помощь влияние на людей с прогрессирующей деменцией.

Заключительные мысли

Исследований с участием людей с прогрессирующей деменцией проведено мало, в основном, из-за этических проблем. Однако, несмотря на то, что исследования с участием людей с деменцией провести трудно, необходимо больше хорошо разработанных исследований, чтобы выяснить, как наилучшим образом можно использовать паллиативную помощь применительно к этой особой группе населения.

Заметки по переводу

Перевод: Таштанбекова Чолпон Болотбековна. Редактирование: Юдина Екатерина Викторовна. Координация проекта по переводу на русский язык: Cochrane Russia - Кокрейн Россия (филиал Северного Кокрейновского Центра на базе Казанского федерального университета). По вопросам, связанным с этим переводом, пожалуйста, обращайтесь к нам по адресу:;

Ringkasan bahasa mudah

Cara penjagaan paliatif pesakit demensia peringkat akhir

Soalan ulasan

Dalam kajian ini, kami ingin melihat sama ada penjagaan paliatif dapat membantu pesakit demensia peringkat akjir, keluarga dan penjaga mereka. Kami juga ingin menggambarkan bagaimana penyelidik cuba menilai kesan penjagaan paliatif.

Latar belakang

Pesakit demensia peringkat akhir mempunyai masalah ingatan yang teruk dan juga masalah untuk membuat keputusan yang mudah. Selalunya, mereka tidak lagi dapat berkomunikasi melalui pertuturan. Mereka memerlukan banyak bantuan daripada penjaga mereka. Pesakit demensia peringkat akhir boleh hidup untuk jangka masa yang lama. Ia adalah amat sukar untuk menjangka secara tepat tentang jangka hayat pesakit demensia peringkat akhir.

Penjagaan paliatif (atau penjagaan akhir hayat) merupakan satu cara untuk menjaga pesakit yang tidak dapat disembuhkan Tujuan utama penjagaan paliatif adalah untuk mengurangkan kesakitan dan mengekalkan kualiti hidup sebaik mungkin sebelum pesakit meninggal dunia. Penjagaan paliatif selalu digunakan untuk pesakit kanser namun jarang untuk pesakit demensia peringkat akhir

Ciri-ciri kajian

Kami telah meneliti kajian yang diterbitkan sehingga Januari 2016. Kami mendapati hanya dua kajian yang sesuai (189 orang), kedua-duanya dari Amerika Syarikat. Kami juga menjumpai enam kajian yang sedang dijalankan tetapi keputusannya belum lagi diterbitkan.

Keputusan utama

Satu kajian mendapati bahawa mempunyai sepasukan kecil doktor dan jururawat terlatih dalam penjagaan paliatif boleh membawa sedikit perubahan dalam cara layanan pesakit demensia semasa berada di hospital. Tetapi, mempunyai pasukan khas ini bermakna bahawa lebih ramai akan mempunyai pelan penjagaan paliatif semasa mereka dibenarkan keluar hospital. Satu lagi kajian mengkaji sama ada jika diberikan maklumat bertulis kepada saudara-mara pesakit bagi menjelaskan pelbagai kaedah yang boleh digunakan untuk memberi makan kepada pesakit demensia lanjutan dapat membantu saudara-mara atau pesakit itu sendiri. Kajian ini mendapati bahawa pemberian maklumat ini kepada saudara-mara dapat memudahkan mereka untuk membuat keputusan mengenai kaedah yang akan digunakan untuk memberi makan kepada pesakit demensia.

Kualiti bukti

Kami hanya menjumpai dua kajian dan kedua-duanya menggunakan kaedah penjagaan paliatif yang amat berbeza. Kami tidak dapat memastikan ketepatan keputusan yang dilaporkan di sini, sebahagiannya disebabkan hanya sebilangan kecil orang yang mengambil bahagian dalam kajian tersebut. Jadi dari kajian ini, adalah sukar untuk memastikan sama ada penjagaan paliatif membawa perubahan kepada pesakit demensia peringkat akhir.


Penyelidikan ke atas pesakit demensia peringkat akhir adalah amat sedikit, selalunya disebabkan isu etika. Walaupun sukar untuk menjalankan penyelidikan ke atas pesakit dementia, lebih banyak kajian yang dirancang dengan baik masih diperlukan untuk mengkaji cara penjagaan paliatif yang paling sesuai bagi populasi istimewa ini.

Catatan terjemahan

Diterjemahkan oleh Lee Zcho Huey (Penang Medical College). Disunting oleh Andey Rahman (Universiti Sains Malaysia). Untuk sebarang pertanyaan mengenai terjemahan ini sila hubungi

Resumo para leigos

Cuidados paliativos para pessoas com demência avançada

Pergunta de revisão

Nesta revisão queríamos ver se os cuidados paliativos beneficiam as pessoas com demência avançada ou a sua família ou cuidadores. Também queríamos descrever como os investigadores tentaram medir o efeito de cuidados paliativos.


As pessoas com demência avançada têm graves problemas de memória e têm problemas em tomar decisões simples. Nesta fase geralmente não são capazes de comunicar pela fala. Precisam de muita ajuda por parte dos seus cuidadores. As pessoas com demência avançada podem viver durante muito tempo. É muito difícil dizer exatamente quanto tempo viverá uma pessoa com demência avançada.

Os cuidados paliativos (ou cuidados de fim-de-vida) são uma forma de cuidar de pessoas que têm doenças que não podem ser curadas. Os principais objetivos dos cuidados paliativos são reduzir a dor e manter a melhor qualidade de vida possível. As pessoas com cancro recorrem frequentemente aos cuidados paliativos, mas as pessoas com demência avançada nem tanto.

Características dos estudos

Revimos a investigação publicada até janeiro de 2016. Encontrámos apenas dois estudos adequados (189 pessoas), ambos dos Estados Unidos. Também encontrámos seis estudos que estavam em curso, mas cujos resultados ainda não foram publicados.

Principais resultados

Um estudo constatou que ter uma pequena equipa médica e de enfermagem treinada em cuidados paliativos fez pouca diferença em relação a como as pessoas com demência avançada foram tratadas enquanto hospitalizadas. Contudo, receber acompanhamento por parte desta equipa significa que mais pessoas tinham um plano de cuidados paliativos aquando da alta hospitalar. O outro estudo avaliou se dar informação escrita aos familiares, explicando os métodos diferentes que podem ser usados para alimentar as pessoas com demência avançada, ajudou os familiares ou a pessoa em questão. Este estudo verificou que dar aos familiares esta informação facilitou as decisões acerca de que métodos seriam utilizados para alimentar a pessoa com demência.

Qualidade da evidência

Encontrámos apenas dois estudos, e os dois métodos de cuidados paliativos nestes estudos eram muito diferentes. Não podemos ter muita certeza sobre a precisão de qualquer um destes resultados, em parte porque apenas um pequeno número de pessoas participou nos estudos. Assim, com base nestes estudos, é difícil afirmar com certeza se os cuidados paliativos têm impacto em pessoas com demência avançada.

Considerações finais

Pouca investigação tem sido feita com pessoas com demência avançada, muitas vezes por preocupações éticas. No entanto, embora seja difícil de fazer investigação com pessoas com demência, são necessários mais estudos bem desenhados para perceber como os cuidados paliativos podem ser otimizados nesta população particular.

Notas de tradução

Tradução por: Margarida Rebolo, Neuroser, com o apoio da Cochrane Portugal

















《実施組織》ウォルトンみちよ翻訳 渡辺範雄監訳 [2017.6.28]《注意》この日本語訳は、臨床医、疫学研究者などによる翻訳のチェックを受けて公開していますが、訳語の間違いなどお気づきの点がございましたら、コクラン日本支部までご連絡ください。なお、2013年6月からコクラン・ライブラリーのNew review、Updated reviewとも日単位で更新されています。最新版の日本語訳を掲載するよう努めておりますが、タイム・ラグが生じている場合もあります。ご利用に際しては、最新版(英語版)の内容をご確認ください。 《CD011513》