你是患有痴呆症的人士的好朋友嗎？ · 你是患有痴呆症的人士...

我使用積極並且富有支持性的語言 1 2 3 4 5

我嘗試做新的事情 1 2 3 4 5

我使用幽默 1 2 3 4 5

我不糾正或爭辯 1 2 3 4 5

我耐心而又靈活 1 2 3 4 5

我不問朋友答不上來的問題 1 2 3 4 5

我充滿樂觀 1 2 3 4 5

我仔細傾聽 1 2 3 4 5

我讓朋友可以討論自己的感覺 1 2 3 4 5

我做出表揚和祝賀 1 2 3 4 5

我親切而又富有關愛 1 2 3 4 5

我把朋友作為成年人對待 1 2 3 4 5

我利用自己對人情事理的瞭解 1 2 3 4 5

我使用熟悉的常規程序並且定期拜訪 1 2 3 4 5

我熟悉各種資源和支持服務 1 2 3 4 5

你是患有痴呆症的人士的好朋友嗎？

完成以下自我評估，考慮你如何能夠找到方法來

提高自己的朋友評分。

1 不太好到 5 好朋友

(Bell & Troxell，2002年，《富有尊嚴的生活》，第152頁)。

澳洲阿耳玆海默氏病協會簡介

澳洲阿耳茲海默氏病協會是代表痴呆症患者及其

家人和照顧者的全國最高機構。我們的遠景目標

是讓社會致力預防痴呆症，同時重視和支持身患

痴呆症的人士。

澳洲阿耳茲海默氏病協會提供資訊、支持、

代言、教育服務和計劃，以改善身患痴呆症的人

士的生活。

澳洲阿耳茲海默氏病協會是痴呆症患者及其家人

和照顧者的代言機構，鼓勵患有早期痴呆症的人

士及其家人和照顧者發出共同的聲音，分享自己

的體驗，參加我們的代言工作。

有關我們的服務詳情及瞭解你如何能夠幫助

我們，請瀏覽：fightdementia.org.au 或致電全國癡呆症幫助熱線1800 100 500

FIGHTDEMENTIA.ORG.AU

全國癡呆症幫助熱線An Australian Government Initiative

1800 100 500

“失去記憶和能力，已經夠難了更別說還失去朋友”

朋友非常重要如何與患有痴呆症的朋友保持聯繫

理解教育

理解教育

或者通過翻譯與傳譯服務處

131 450

GC

Typewritten Text

I use positive and supportive language 1 2 3 4 5

I try new things to do 1 2 3 4 5

I use humour 1 2 3 4 5

I do not correct or argue 1 2 3 4 5

I am patient and flexible 1 2 3 4 5

I don’t ask questions he/she can’t answer 1 2 3 4 5

I am optimistic 1 2 3 4 5

I listen carefully 1 2 3 4 5

I allow my friend to talk about feelings 1 2 3 4 5

I compliment and congratulate 1 2 3 4 5

I am affectionate and caring 1 2 3 4 5

I treat my friend as an adult 1 2 3 4 5

I use common sense 1 2 3 4 5

I use familiar routines, regular visits 1 2 3 4 5

I am familiar with resources and support 1 2 3 4 5

Are you a good friend to someone living with dementia?

Complete this self assessment and consider how you can find ways to improve your friend rating.

1 Not so good to 5 Good friend

(Bell & Troxell, 2002, A Dignified Life, p152).

ABOUT ALZHEIMER’S AUSTRALIA

Alzheimer’s Australia is the national peak body representing people with dementia, their families and carers. Our vision is a society committed to the prevention of dementia while valuing and supporting people living with dementia. Alzheimer’s Australia provides information, support, advocacy, education services and programs to improve the lives of people living with dementia.

Alzheimer’s Australia is an advocate for people with dementia, their families and carers and encourages people with early stage dementia, their families and carers to share their voices and experiences and take part in advocacy. For more information about our services and to find out how you can help us, visitfightdementia.org.au or call theNational Dementia Helpline 1800 100 500


NATIONAL DEMENTIA HELPLINEAn Australian Government Initiative

1800 100 500

“It’s hard enough losing your memory and abilities without losing your friends as well”

How to stay connected to a friend living with dementiaor via the

Translating and Interpreting Service 131 450

本手冊改編自“朋友與同伴”討論會。該討論會是澳

洲阿耳茲海默氏病協會維多利亞州分會開展的項目，

獲得了一個信托基金的慷慨資助。

特此感謝以下人士對本手冊製作提供的支持：Linda

Gordon、Denise Wissman、Kath Harper以及參加該項

目並與我們分享其故事的那些朋友。姓名以及其它可

以辨別身份的個人資料均已改變。

免責聲明：本手冊僅供參考，無意提供醫療建議。對所提供資訊的任何錯誤或遺漏，澳洲阿耳茲海默氏病協會及其僱員概不負責。

© Lynton Crabb攝影室:第1、2、5、14、19頁上的照片；其它照片：istockphoto

ISBN 978 1 921570 42 1

© 2012年－澳洲阿耳茲海默氏病協會維多利亞州分會 ABN 14 6 71 840 186

© Lynton Crabb Photography

參考文獻

蘇格蘭阿耳玆海默氏病協會，Lochaber分會(2003年) 《如果有朋友一點幫助，我就可以過得去：癡呆症患者的朋友須知》。蘇格蘭阿耳玆海默氏病協會

Bell, V. & Troxell, D. (1997年) 《對待阿耳玆海默氏病護理的最好朋友方法》醫務人員出版社：美國巴爾的摩。

Bell, V. & Troxell, D. (2001年) 《作為最好朋友的工作人員：在阿耳玆海默氏病計劃中建立一種關愛文化》。醫務人員出版社：美國巴爾的摩。

Bell, V. & Troxell, D. (2002年) 《富有尊嚴的生活：對待阿耳玆海默氏病護理的最好朋友方法-家庭照顧者指南》。健康溝通：美國迪爾菲爾得海灘。

Bezant, E. & Eaves, P. (2006年)《被竊取的時光》。寫作具有啟發性： Quinns Rocks, WA 6030

Crisp, J. (2000年)《與患有阿耳茲海默氏病的人士保持聯繫》。Ausmed出版社：墨爾本。

注意: 以上所有資源均可通過本地的澳洲阿耳茲海默氏病協會圖書館查閱。

理解教育

This booklet has been adapted from the Friends and Companions workshop - a project undertaken by Alzheimer’s Australia Vic which was generously supported with funding from a Trust.

We would like to acknowledge the following people who contributeed to the development of this book: Linda Gordon, Denise Wissman, Kath Harper, and those friends of the project who shared their stories with us. Names and other identifying personal details have been changed.

Disclaimer:This booklet is for information purposes. The booklet does not purport to provide medical advice. Alzheimer’s Australia and its employees are not liable for any error or omission in the information provided.

© Lynton Crabb Photography: photos p1, 2, 5, 14, 19 Other photos: istockphoto

ISBN 978 1 921570 42 1

© 2012 Alzheimer’s Australia Vic ABN 14 6 71 840 186


REFERENCES

引言 3

怎樣才是好朋友？ 4

在朋友被診斷患有痴呆症時 5

痴呆症須知 6

癡呆症的常見體徵與症狀 7

需要切記的注意事項 9

在情況發生改變時 10

溝通與聯繫 11

良好溝通的應做事項和勿做事項 12

興趣 13

不同參與程度 15

與朋友一起做感興趣的事情 17

充分利用拜訪機會的小竅門 18

參考資料封底摺口

澳洲阿耳茲海默氏病協會簡介封底

你是患有痴呆症的人士的好朋友嗎？封底摺口內側

目錄

理解與教育 1

Introduction 3What makes a good friend? 4When a friend is diagnosed with dementia 5Dementia facts 6Common signs and symptoms of dementia 7Helpful things to remember 9When things change 10Communication and connection 11Do’s and Don’ts for good communication 12Interests 13Different levels of participation 15Interests to experience with your friend 17Tips for making the most of your visit 18

References backflapAbout Alzheimer’s Australia back coverAre you a good friend to someone livingwithdementia? insidebackflap

CONTENTS

Understand and Educate 1

2 理解與教育

2 Understand and Educate

簡介

朋友非常重要。朋友幫助我們渡過人生的

風風雨雨，起起伏伏。朋友接受我們真正的

自己。

在朋友身患痴呆症時，我們怎樣能夠保持這

種特殊的紐帶呢？我們怎樣以富有意義的方

式保持聯繫呢？我們可以一起繼續享受什麼

興趣呢？

這些就是本手冊力求解決的一些重要問題

呢？在你發現與身患痴呆症在一起的富有

意義的不同方式之際，我們希望本指南中

的資訊和建議有助於你們保持聯繫。

“即使我的朋友不記得我確切的名字，但她仍然對我的基本身份有所感覺，覺得我是一個深受愛戴的“非常重要的人”。我上一次去看她時，有一個路人問我是誰，這就是她回答的原話。” (Crisp，2000年，《與患有阿耳茲海默

氏病的人士保持聯繫》，第4頁)

理解與教育 3

INTRODUCTION

Friendships matter. Friends help us navigate life’s ups and downs. Friends accept us as we are.

What can we do to maintain this special bond when a friend is living with dementia? How do we stay connected in ways that are meaningful, and what interests can we continue to enjoy together?

These are some of the important questions this booklet aims to address. We hope the information and suggestions in this guide help you stay connected, as you discover different and meaningful ways to be with a friend living with dementia.

“Even when my friend became unsure of my exact name, she still had a sense of my basic identity as a much-loved and ‘very important person’. These were her own words during my last visit to her in reply to a passer-by who asked who I was.” (Crisp, 2000, Keeping in Touch with

Someone who has Alzheimer’s, p4)


• 好朋友接受你真正的自己（不先入為主）。

• 好朋友細心聆聽。

• 好朋友在你左右。

• 你可能不會與其他人分享一些事情，但卻會跟好朋友

分享。

• 好朋友彼此尊重，平等相待。

真正好的朋友，我們很可能一只手都可以數得過來，

但以上之類的素質，卻使這些友誼對我們如此重要。

我們對這些密切而又特殊的友誼的需要，不會因為疾病過

程的發生而減少。事實上，這很可能是我們最需要朋友的

時候。然而，因為對未知的畏懼，或者是因為我們所看到

的改變，要繼續我們過往所知的友誼，我們的能力受到了

干擾。

因為痴呆症的緣故會發生一些改變，但這種友誼的重要因

素仍然保持不變。

怎樣才是好朋友？

“對於我們所關心的患有癡呆症的人，如果我們充分肯定他們現在的價值，而不是對不再可能的事情心煩意亂，沒完沒了，那麼他們應付癡呆症就會更加容易” (Crisp，2000年，第12頁)

4 理解與教育

• A good friend accepts you as you are (is non-judgemental)

• A good friend listens

• A good friend is there for you

• You can share things with a good friend that you might not share with others

• Good friends respect each other as equals

We can probably count on one hand our really good friendships and the qualities, such as those above, that make them so important to us. The need for these close and special friendships does not diminish because a disease process occurs. In fact, the chances are that this is when we need our friends most. Yet, often the fear of the unknown, or the changes that we see, interfere with our ability to continue with the friendship as we knew it.

Changes will occur as a result of dementia, but important elements of the friendship still remain.

WhaT makES a gOOD fRIEND?

“It is easier to cope with dementia in someone for whom we care if we give full value to the person that they are now rather than fretting endlessly over what is no longer possible” (Crisp, 2000, p12)


在朋友被診斷患有痴呆症時

“我感到非常緊張；我們已經做

了這麼長時間的朋友。”一個朋

友說，他們並不真正知道痴呆症

意味著什麼，也不知道這種疾病

有什麼症狀或者將如何發展。

另一個朋友說自己感到茫然不

知所措：“我不知道怎樣去幫

助。”

痴呆症患者也會有一些非常強烈

的感覺。他們可能會感到：

• 茫然

• 悲傷

• 困惑

• 焦慮

• 難為情

• 恐懼

• 沮喪

• 憤怒

• 多疑

上述的任何感覺都是任何一種關

係的正常部份，可能會給朋友之

間的聯繫帶來考驗。然而，如果

你們曾經有過很好的友誼，你就

會懷念生活中有朋友相伴的時

光，日後可能會對沒有保持聯繫

而感到後悔。

身患痴呆症的人的朋友反映說，

他們得知朋友的診斷時感到

“特別震驚，”或者他們

“懷疑過有什麼事情不對。”

理解與教育 5

WhEN a fRIEND IS DIagNOSED WITh DEmENTIa

‘It stressed me a lot; we’ve been friends for such a long time.’ One friend said they did not really know what dementia meant, did not know the symptoms of the disease or how it would progress. Another expressed feeling at a loss: ‘I don’t know how to help’.

Feelings are powerful for the person with dementia too. They may experience:• Loss• Sadness• Confusion• Anxiety• Embarrassment• Fear• Frustration• Anger • Paranoia

Any of the above feelings is a normal part of any relationship and can test the connection between friends. However, if you’ve had a good friendship, you’ll miss having your friend in your life and later on you might regret not having kept in touch.

Friends of people living with dementia have reported feeling, ‘terribly shocked’ to learn of their friend’s diagnosis or that they, ‘suspected something was wrong’.


痴呆症須知

• 癡呆症一詞泛指記憶力、理解力、社交技能以及正常情感反應力的

喪失。

• 每個痴呆症患者都獨一無二，痴呆症的發展因人而異。

• 痴呆症是一種具有漸進性並且不可逆轉的疾病過程。

• 風險隨年齡而增加，但並非正常老齡化的一部份。在65歲以上的

人中較為常見（在85歲以上的人當中，每4個人就有1個患有痴呆

症），但也可能影響30、40和50多歲的人。

• 阿耳玆海默氏病是最常見的癡呆症類型，佔病例中的50%至70%之

間。

• 其它痴呆症包括血管性痴呆症、額顳葉性退化症、雷微小體式疾病

以及酒毒性痴呆症(科爾薩科夫綜合症)。

• 大多數類型的痴呆症都無法治癒；但據發現，藥物和一些其它治療

可以為一些患者減輕某些症狀。

• 痴呆症患者及其家人和朋友可以獲得支持。這種支持可以對那些身

患痴呆症的人士的生活質素產生積極的影響。

6 理解與教育

DEmENTIa faCTS

• Dementia is a broad term which describes a loss of memory, intellect, social skills and what could be considered normal emotional reactions.

• Every person with dementia is unique and the progression of dementia will be different for everyone.

• Dementia is a disease process that is progressive and irreversible.

• Risk increases with age but is NOT a part of normal ageing. It is more common at 65 years and over (1 in 4 people aged 85+ have dementia) but it can also affect those in their 30s, 40s and 50s.

• Alzheimer’s disease is the most common form of dementia and accounts for between 50% and 70% of cases.

• Other dementias include vascular dementia, fronto-temporal lobar degeneration, Lewy body disease and alcohol-related dementia (Korsakoff’s syndrome).

• There is no cure for most forms of dementia; however, medications and some alternative treatments have been found to relieve certain symptoms for some people.

• Support is available for the person with dementia, their families and friends. This support can make a positive difference to the quality of life of those living with dementia.


癡呆症的常見體徵與症狀

這些體徵和症狀可

能包括以下變化

範例

記憶力記不得最近的事情或資訊

語言難以找到詞語來描述事情或說出

事物的名稱

視覺空間難以找到去當地商店等熟悉地方

的路

計劃無法安排制定購物清單之類的

任務

排序難以按照特定順序做事情，如泡

茶或穿衣

知識無法記起和應用所儲存的知識，

如怎樣數錢

情感似乎更沒有興趣或關聯，也可能

更加焦慮

洞察力確實不知道自己的行為及其後

果，儘管存在明顯的反證

“我們無法消除他們的症狀，但可以減輕影響，幫助使他們的生活更有價值。” (Crisp， 2000年，第8頁)

理解與教育 7

COmmON SIgNS aND SympTOmS Of DEmENTIa

These may include changes to

Example

MEMORY not being able to recall recent events or information

LANGUAGE problems finding the words to describe or name things

VISUO-SPATIAL SKILLS

difficulty finding the way to familiar places like the local shop

PLANNING being unable to organise tasks such as making a shopping list

SEQUENCING difficulty doing things in a particular order, such as making a cup of tea or getting dressed

KNOWLEDGE being unable to recall and apply stored knowledge like how to count money

EMOTIONS appearing to be less interested and connected, or perhaps more anxious

INSIGHT being honestly unaware of their own behaviour and its consequences, despite clear evidence to the contrary

“We cannot abolish their symptoms, but we can lessen the effects and help to make their life more worth living” (Crisp, 2000, p8)


simon和bradley“大約在三年前，我開始注意到他有了一些難以解釋的變

化。在我們的社交小組中，他會冒出完全不著邊際的話，

好像他沒有好好聽似的。

他被診斷患有額顳葉性痴呆症，他的行為、健忘和頭腦糊

塗於是有了解釋。他才40歲出頭，所以很令人震驚。

一開始，在他還住在家里時，我就像往常一樣，上門拜

訪，喝杯咖啡，聊聊天。現在，他進了療養院，我盡可能

經常去看他，我們一起玩牌－按Simon的遊戲方式－或者

一起去散步。作為我的朋友，Simon這個人依然不變。”

8 理解與教育

SImON aND BRaDlEy‘About three years ago I began to notice changes in him that were hard to explain. In our social group he would come out with something totally off the topic, as though he was not tuned in properly.

The diagnosis of fronto-temporal lobe dementia explained his behaviour, the forgetfulness and confusion. He’s only in his early 40s, so it was a shock.

At first, while he was still at home, I did what we had always done; dropped in for a coffee and a chat. Now he is in the nursing home I go as often as I can manage and we play cards – Simon’s version of the game – or we go for a walk. Simon the person, my friend, is still there.’


需要切記的注意事項

“可能只是意味著，友好相伴，仍然給予關注，對彼此做出反應。” (Crisp， 2000年，第8頁)

(Bell & Troxell，2002年，《富有尊嚴的生活》，第20頁、第95頁)。

• 身患痴呆症的人士非常努力去理解週遭世界，看清

迷惑，應對自己的症狀。

• 做好準備，“設身處地”，為他們著想，有助於克服否

認心理，獲得認可。

• 不要把因為一個人喪失記憶力而造成的錯誤和混淆放到

心裡去。

• 感到頭腦糊塗、悲傷與喪失、甚至憤怒，這些都是痴呆

症引起的正常感覺。

• 讓你們的友誼保持為一種輕鬆的關係，不受家庭關係的

情感色彩影響。

• 提醒自己：在這種時候，一個人需要的是真正的好

朋友。

• 盡可能對患者的親人或照顧者態度友善。

• 你的朋友可能忘記了你的名字，但他們會記得自己喜

歡你。

理解與教育 9

hElpfUl ThINgS TO REmEmBER

“It can simply mean being there for them as a friendly presence, still giving attention to and responding to each other.” (Crisp, 2000, p8)

(Bell & Troxell, 2002, A Dignified Life, pp20, 95).

• People living with dementia are working very hard to make sense of their world, to see through the confusion and deal with their symptoms.

• Being prepared to ‘walk a mile in their shoes’ will help overcome denial and gain acceptance.

• Don’t take personally mistakes and mix ups due to a person’s memory loss.

• Feelings of confusion, grief and loss, and even anger, are normal feelings caused by dementia.

• Let your friendship remain a relaxed relationship without the emotional overtones of family interactions.

• Remind yourself that what a person needs at this time is a really good friend.

• Be, when possible, a friendly visitor to the person’s loved one or carer.

• Your friend may forget your name but they will remember that they like you.


在情況發生改變時

• 身患痴呆症的朋友可能會忘記你們倆都享受的共同經歷和興趣。

但儘管患有痴呆症，朋友的本質是不會變的。

• 注重他們的現在，尊重他們應對的挑戰。

• 請記住：與他人接觸，有助於保持一種身份認同和價值感。你對一

個人的行為舉止，可能會深深提醒他們自己在你生活中的作用，

讓他們想起這種作用對你的價值。

• 儘管你與朋友的交往在一段時間後可能有所改變，但你們共有興趣

的基本部份不會改變。

• 身為朋友，你讓他們感到熟悉和自在，僅此便是一種樂趣。你可能

會越來越發現，身患痴呆症的朋友需要與人接觸帶來的安慰。

• 即使你與朋友的關係沒有身體上的接觸，但你可能會發現，輕輕的

接觸－握手、交臂或擁抱－變得更加重要。

(Crisp，2000年，第5頁)

10 理解與教育

WhEN ThINgS ChaNgE

• A friend living with dementia may forget some of the shared experiences and interests you have both enjoyed. But, despite dementia, the essential part of the person survives.

• Focus on the person they are now and respect what they are dealing with.

• Remember that contact with others helps maintain a sense of identity and worth. How you behave towards a person can be a powerful reminder to the person of their role in your life and the value of that role to you.

• While your interactions with your friend may change over time, the essentials of the interests you shared can survive.

• Simply being with a friend is a pleasure because of their familiar, comforting presence. You may find that, more and more, the friend living with dementia needs the reassurance of human contact.

• Even if your relationship with your friend was not physically demonstrative, you may find that gentle touch – holding hands, linking arms, or a hug – becomes more important.

(Crisp, 2000, p5)


溝通與聯繫

例如：

“昨天我們沿著湖邊開車，我真

得很喜歡。”

“我很期盼John今天晚上來看

我們。”

“你的孫女Sarah給你做了這

張卡，真是太可愛了。”

對於我們保持身份認同並且與他人保持聯繫，溝通至關重要。相對而

言，我們日常交流的內容可能並不重要，重要的是這些交流將我們聯

繫在一起的作用。

隨著痴呆症的發展，語言技巧和詞彙可能會減弱，但對溝通的渴望不

會消退。人們繼續渴望理解他人並且得到他人理解。即使感覺起來好

像唱獨腳戲，你也可以保持溝通的進行。

你的朋友可能忘記最近活動的細節，甚至可能忘了活動本身。這並不

表示其不感興趣或者不重要；這只是痴呆症的主要影響之一。

通過利用提示，或者側重於他們的記憶，你可以幫助朋友回憶起這些

活動，而不會使他們覺得自己很笨。

理解與教育 11

COmmUNICaTION aND CONNECTION

Language skills and vocabulary can diminish as dementia progresses but the desire to communicate does not. People continue to want to understand and be understood. You can keep the communication going even when it feels one-sided.

Your friend may forget details of recent events, or the event itself. This is not an indication of indifference or lack of significance; it is simply one of the major impacts of dementia.

By using prompts, you can help your friend recall these events without making them feel stupid or by focussing on their memory.

For example:

‘I really enjoyed our drive around the lake yesterday.’

‘I am looking forward to John’s visit this evening.’

‘It was so lovely that your granddaughter Sarah made this card for you.’

Communication is essential for maintaining our identity and connecting us to others. The content of our everyday exchanges may be relatively unimportant. What counts is their role in connecting us together.


良好溝通的應做事項和勿做事項

良好溝通的應做事項：

• 保持使用簡單的語言

• 利用重覆

• 一次問一個問題或做出一種

陳述

• 使用積極的語言（如“讓我們

享受這一刻吧”）

• 做大部份談話，幫助填補空

白，但不要取而代之

• 將自己的語速與朋友的語速一

致，留意疲勞的跡象，利用較

好的時間安排

• 使用幽默

• 請記住：在語言水平降低時，

身體語言和非言語溝通（例如

你的語調）就變得甚至更加

重要。

良好溝通的勿做事項：

• 不要照字面理解朋友說的話

• 不要提供太多選擇

• 不要爭論或對抗

• 不要居高臨下跟朋友說話

• 不要視而不見地談論朋友

• 不要問需要過多回憶的問題

• 不要提供太早以前的資訊。

良好溝通的以下基本技巧確實行之有效。

12 理解與教育

DO’S aND DON’TS fOR gOOD COmmUNICaTION

Do’s for good communication:

• Keep language simple

• Use repetition

• Ask one question or make one statement at a time

• Use positive language (for example, ‘let’s enjoy the moment’)

• Do most of the work, help fill in blanks but don’t take over

• Use good timing by matching your conversational pace to your friend’s and be alert to signs of fatigue

• Use humour

• Remember body language and non-verbal communication (for example your tone of voice) become even more important when language diminishes.

Don’ts for good communication:

• Don’t take the person literally

• Don’t offer too many choices

• Don’t argue or confront

• Don’t talk down to the person

• Don’t talk about the person as if they were not there

• Don’t ask questions that require remembering too much

• Don’t give information too far in advance.

The following basics of good communication do work.


興趣

樂趣 (Pleasure) – 你們倆都享受這段時間。

在場 (Presence) – 你表明自己想跟朋友在一起。

參與 (Participation) – 你們倆都盡可能參與。

保持興趣的藝術不在於做什麼，而是在於一起做。保持興趣有助於每

個人都感到卓有成效，並且能夠出一份力。

切記:

• 興趣無所不在。

• 他們可以利用過去的愛好以及來自職業生涯的技能。

• 我們認為絕對沒有效果的活動，有時的確行之有效。

• 活動可能只持續五分鐘。

• 活動應該自願。

• 活動在性質上應該是成年人的活動。

• 讓年輕人和兒童一起參與的活動可能效果很好。

• 活動需要由其他人發起。

• 刺激人的感官的活動可帶來樂趣。

另外還要切記：

• 即使在一起什麼都不做，其實也可能有作用。

花時間在一起時需要遵守3 P原則：

理解與教育 13

2

3

1

INTERESTS

Pleasure – that you both enjoy the time.

Presence – that you show you want to be with the person.

Participation – that you both get involved as much as possible.

The art of maintaining interests is not what is done; it is in the doing together. Maintaining interests helps everyone feel productive and able to contribute.

Remember that:

• Interests are everywhere.• They can tap into past hobbies and skills from working lives.• Those we think will never work sometimes do.• They may only last five minutes.• Activities should be voluntary.• They should be adult in nature.• Ones that include young adults and children may work well• Activities need to be initiated by others.• Those that stimulate the senses bring pleasure.

And another thing to keep in mind:

• Doing nothing together can actually be doing something.

There are 3 P’s when spending time together:


2

3

1

14 理解與教育

不同參與程度

只是因為身患痴呆症的人無法像以前一樣獨立地做事情，並不意味

著他們對做這些事情不感興趣。他們仍能參與其中。

以下範例表明，像製作餅乾這樣簡單而充滿樂趣的興趣活動，無論

是自己能夠做整個活動的人，還是只能觀看聆聽的人，每個人都可

以在其中發揮一定的作用。

我能發起、計劃和完成所有方面

能夠決定餅乾種類，能夠做好計劃，購買原料，能夠遵照食譜，

成功製備和烘烤餅乾

如果有人安排好，我都能做

一旦別人安排好原料並且解釋食譜，即能夠製作餅乾

我能做其中的某些部份

根據能力，能夠量好、混合或做好餅乾形狀

如果有人做給我看，我就能做

在提示和幫助下，能夠重覆一個步驟

我能旁觀和監督

能夠告訴你餅乾看起來是否好，留意聽

烤箱定時器的鈴聲

我能做出討論

能夠討論自己製作餅乾的經驗

我能評判

能夠品嚐餅乾

我能在場旁觀

在你製作餅乾

時，能夠一

邊看，一

邊聽

(改編自Bell & Troxell，2001年，《作為最好朋友的工作人員》，第204頁)

製作餅乾：

理解與教育 15

DIffERENT lEvElS Of paRTICIpaTION

Just because a person living with dementia cannot do things as independently as they once did does not mean they are not interested in doing these things. They will still be able to play a part.

Here is an example where a simple, pleasurable interest such as making biscuits includes a role for everyone, from the person who can do the whole activity by themselves to the person who can simply watch and listen.

I can initiate, plan and complete all aspectsAble to decide on kind of biscuits, able to plan, buy ingredients, can follow

the recipe and successfully prepare and cook the biscuitsI can do it all if someone sets it up

Able to make the biscuits once the ingredients are set out and recipe is explained by another person

I can do some part of itCan either measure, mix, or shape biscuits depending on ability

I can do it if someone shows meAble to repeat one step with prompting and help

I can watch and monitorAble to tell you if the biscuits look right,

listen for the oven clock to ringI can talk about it

Able to talk about own experiences of making biscuits

I can critiqueAble to taste biscuitsI can watch and beAble to watch and listen while you

make the biscuits

(Adapted from Bell & Troxell, 2001, The Best Friends Staff, p204)

Making biscuits:


媽媽和louise“Louise是媽媽時間最長的老朋友。她告訴我說，在她去看望媽媽時，不知

道媽媽是否真得還認識她，所以感到很彆扭。媽媽患有非常晚期的痴呆症，

她幾乎不認得人，而且無法用言語溝通。

媽媽和Louise過去曾一起坐遊輪，重新體驗她們一起旅行的時光，這是她們

曾經喜歡做的事情之一。我向Louise提議，她不妨試試在上午做一次短時間

的拜訪，帶上幾本有趣的旅遊手冊。媽媽真得很喜歡這一次拜訪。她笑著

用手指著圖片。她們倆的友誼是兩個人生活的一個主要部份，這令人倍感

欣慰。”

16 理解與教育

mUm aND lOUISE‘Mum’s oldest friend, Louise, told me she felt awkward when visiting as she had no idea if Mum actually knew her anymore. Mum had quite advanced dementia. She was showing little recognition and could not communicate verbally.

One of the things Mum and Louise had enjoyed doing was going on a cruise together and re-living their travels. I suggested to Louise that she try a short, morning visit and take in a few interesting travel brochures. Mum really enjoyed this visit. She smiled and pointed at the pictures. It was a great relief as the friendship was a central part of both their lives.’


與朋友一起做感興趣的事情

開車兜風在公園裡坐坐參加禮拜

吃冰淇淋在練習場練習打高爾夫球

逛戶外小市場拜訪共同的朋友在靜

謐的咖啡館喝咖啡在陽台上坐坐觀鳥

蹓狗看照片一起讀報疊洗好的衣物播種

參觀安靜的美術館踢球泡茶整理硬幣或郵票

擠搾新鮮橙汁製作和書寫卡片看電視

聽電台板球賽轉播放音樂唱歌懷舊一起做簡

單的小測驗或猜謎唱自己喜愛的讚美詩和歌曲

朗誦詩歌動手鋸木頭享受按摩整理抽屜互相梳頭

一起燒烤逛苗圃烤餅乾給花澆水

製作拼貼畫

與孫子/女一起玩…

理解與教育 17

INTERESTS TO ExpERIENCE WITh yOUR fRIEND

Go for a drive Sit in the park Attend a religious service Eat an ice cream Practice golf at a driving range Go to a small outdoor market Visit a mutual friend Have a coffee in a quiet cafe Sit on the veranda Watch the birds Walk the dog Look at photos

Read the newspaper together Fold the washing

Plant seeds Visit a quiet gallery Kick a ball Make a

cup of tea Sort coins or stamps Squeeze oranges to

make fresh juice Make and write cards Watch TV Listen

to the cricket on the radio Play music and sing Reminisce

Do a simple quiz or puzzle together Sing favourite hymns

and songs Recite poetry Hand sand a piece of wood Enjoy a

massage Tidy up a drawer Brush each other’s hair Cook a BBQ together

Visit the nursery Bake biscuits Watertheflowers

Make a collage from cut out pictures

Play with a grandchild together ...


充分利用拜訪機會的小竅門

• 輕鬆自在，不要強顏歡笑。

• 態度靈活－事情可能不按計劃發展。

• 接受這一現實，即你可能不得不發起談話以及要做的事情。

• 帶上什麼東西一起分享。

• 建立拜訪的常規程序：打招呼，自我介紹。

• 在你離開時，問你是否可以再來拜訪，微笑，揮手再見。

• 不要急。你的朋友可能需要時間才能記住你是誰，才能明白你為什

麼在那裡。

• 請記住沉默未必是一件不好的事情。

• 選擇一個安靜而又熟悉的地方，一次介紹一樣東西。

• 如有可能並且想要的話，可以略為經常拜訪，即使只是很短時間。

• 雖然朋友可能不記得你上一次的拜訪，但當時是很喜歡的。

• 善待自己；有些拜訪可能會讓你感到難過。

18 理解與教育

TIpS fOR makINg ThE mOST Of yOUR vISIT

• Be relaxed, be yourself and avoid forced cheerfulness.

• Have a flexible attitude – things may not go to plan.

• Accept that you may have to initiate conversation and things to do.

• Take something with you to share.

• Establish a visiting routine: say hello and introduce yourself. • As you leave ask if you may visit again, smile and wave.

• Don’t rush things. Your friend may need time to register who you are and why you are there.

• Remember that silence is not necessarily a negative thing. • Choose a quiet, familiar location and introduce one thing at a time. • If possible, and desirable, visit with some regularity, even for a brief time. • While your last visit may not be remembered, it was enjoyed at the time. • Be kind to yourself; it’s possible some visits may leave you feeling sad.


sonya和Claire“她是我職業生涯中最重要的

人。我們還是好朋友。看到她應

對這種疾病，我現在對她的欽佩

之情也更為增加。我們仍然保持

友誼，我仍然對她極為尊重。

她總是充滿好奇心，非常愛讀

書，熱衷於發現，因此我下一次

去看她時，會帶上一些讀物。

這是我們繼續分享的樂趣。”

理解與教育 19

SONya aND ClaIRE‘She is the most important person in my professional life. And we are good friends as well. Now my admiration for her also comes from watching her cope with this disease. We still share a friendship and I still respect her enormously. I’m going to try taking something to read to her on my next visit because she has always had such a curious mind, a great love of books and discovery. It is something we continue to share.’


“我無法改變患有痴呆症的人，但我可以改變自己的反應”

20 理解與教育

‘‘I can’t change the person with dementia but I can change my response”


本手冊改編自“朋友與同伴”討論會。該討論會是澳

洲阿耳茲海默氏病協會維多利亞州分會開展的項目，

獲得了一個信托基金的慷慨資助。

特此感謝以下人士對本手冊製作提供的支持：Linda

Gordon、Denise Wissman、Kath Harper以及參加該項

目並與我們分享其故事的那些朋友。姓名以及其它可

以辨別身份的個人資料均已改變。

免責聲明：本手冊僅供參考，無意提供醫療建議。對所提供資訊的任何錯誤或遺漏，澳洲阿耳茲海默氏病協會及其僱員概不負責。

© Lynton Crabb攝影室:第1、2、5、14、19頁上的照片；其它照片：istockphoto

ISBN 978 1 921570 42 1

© 2012年－澳洲阿耳茲海默氏病協會維多利亞州分會 ABN 14 6 71 840 186


參考文獻

蘇格蘭阿耳玆海默氏病協會，Lochaber分會(2003年) 《如果有朋友一點幫助，我就可以過得去：癡呆症患者的朋友須知》。蘇格蘭阿耳玆海默氏病協會

Bell, V. & Troxell, D. (1997年) 《對待阿耳玆海默氏病護理的最好朋友方法》醫務人員出版社：美國巴爾的摩。

Bell, V. & Troxell, D. (2001年) 《作為最好朋友的工作人員：在阿耳玆海默氏病計劃中建立一種關愛文化》。醫務人員出版社：美國巴爾的摩。

Bell, V. & Troxell, D. (2002年) 《富有尊嚴的生活：對待阿耳玆海默氏病護理的最好朋友方法-家庭照顧者指南》。健康溝通：美國迪爾菲爾得海灘。

Bezant, E. & Eaves, P. (2006年)《被竊取的時光》。寫作具有啟發性： Quinns Rocks, WA 6030

Crisp, J. (2000年)《與患有阿耳茲海默氏病的人士保持聯繫》。Ausmed出版社：墨爾本。

注意: 以上所有資源均可通過本地的澳洲阿耳茲海默氏病協會圖書館查閱。

理解教育

This booklet has been adapted from the Friends and Companions workshop - a project undertaken by Alzheimer’s Australia Vic which was generously supported with funding from a Trust.

We would like to acknowledge the following people who contributeed to the development of this book: Linda Gordon, Denise Wissman, Kath Harper, and those friends of the project who shared their stories with us. Names and other identifying personal details have been changed.

Disclaimer:This booklet is for information purposes. The booklet does not purport to provide medical advice. Alzheimer’s Australia and its employees are not liable for any error or omission in the information provided.

© Lynton Crabb Photography: photos p1, 2, 5, 14, 19 Other photos: istockphoto

ISBN 978 1 921570 42 1

© 2012 Alzheimer’s Australia Vic ABN 14 6 71 840 186


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你是患有痴呆症的人士的好朋友嗎？ · 你是患有痴呆症的人士...

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