Foreword

When you see this manual, I fear that your first reaction will be, "Oh no, not this way".

I agree. The first thing you need for a telephone helpline is involvement with Alzheimer patients and their caregivers.

When the Netherlands Alzheimerstichting was founded, press reports ended with a telephone number for more information. As I was secretary general, this was my private number. Thus the telephone helpline started right "at the kitchen table". My wife Vera and I answered the calls in turn - if we were at home.

We soon learned that it was not just information that was being sought. In most cases the caller needed someone who really understood the personal problems, who took their worries seriously and took the time to listen. This can be a tremendous support in the heavy burden of caring for a loved one with dementia.

The number of calls rapidly increased and we became aware that calls should be answered at any time and that an answering machine would not do.

This could be realised by means of a switching system. Today, after almost 12½ year, about 30 volunteers answer the telephone helpline 24 hours a day, seven days a week. They get updated information and training as regularly as possible.

In this manual the experience of our society and many others from different countries have been collected and compiled to form an important source of knowledge for all of us.

I hope and I am sure that this manual can help you to start, develop or improve a telephone helpline. But the most important thing is to get started! Carers need a listening ear and you can provide it.

Henk W. ter Haar

Past Chairman of Alzheimer Europe

We would like to thank all the European Associations involved in this project, especially for the hard and valuable work they have achieved:

· Alzheimer Angehörige Austria (Austria)

· Alzheimer Scotland – Action on Dementia (Scotland)

· Alzheimer Liga (Belgium)

· Alzheimer’s Disease Society (uk)

· Alzheimer -Keskusliitto (Finland)

· Federazione Alzheimer Italia (Italy)

· Alzheimer Society of Ireland (Ireland)

· Alzheimerstichting (Netherlands)

· Alzheimer España (Spain)

· Association Luxembourg Alzheimer

Alzheimer Europe

Alzheimer Telephone Helplines in Europe

Country - Organisation

Contact person & telephone n°

Languages spoken *

Helpline Number

Belgium

Alzheimer Liga

Leen Meulenbergs

(32) 2 210 44 62

NL - FR - EN

(32) 078/152911 (NL)

(32) 078/152910 (FR)

Denmark

Alzheimerforeningen

Susanne Kaagaard

(45) 39 62 29 19

DK - EN

(45) 39 62 29 19

England

Alzheimer Disease Society

Steve Milton

(44) 171 306 06 06

Germany

Deutsche Alzheimer Gesellschaft

Sabine Janssen

Hans-Jürgen Freter

(49) 30 31 50 57 33

DE - EN

(49) 30 31 50 57 33

Finland

Alzheimer-Keskusliitto

Sirkkaliisa Heimonen

(358) 9 6226 200

FI - EN

(358) 9 6226 200

Greece

Greek Association of AD

and Related Disorders

Magda Tsolaki

(30) 31 350 332

EN - GR

(30) 31 350332

Ireland

Alzheimer Society of Ireland

Barbara Scully

(353) 1 284 66 16

Italy

Federazione Alzheimer Italia

Gabriella Salvini Porro

(39) 2 80 97 67

IT - EN -FR - DE

(39) 2 80 97 67

Italy

Associazione Italiana Malattia di Alzheimer

Ermana Rota

(39) 02 89406254

167-371332

(green number)

Norway

Nasjonalforeningen

Håvard Knutsen

(47) 22 44 19 10

NO - SE - EN

(47) 80 115 33 032

Luxembourg

Association Luxembourg Alzheimer

Paul Reuter

(352) 42 16 76

FR - DE - LU - EN

(352) 42 16 76

Netherlands

Alzheimerstichting

Josine van der Poel

(30) (0)30 6596285

NL - EN - DE - FR - ES

(30) (0)30 6567511

Portugal

Alzheimer Portugal

Olivia Robusto Ceitaõ

(351) 1 3533494

PT - EN

(351) 1 3533494

Scotland

Alzheimer Scotland / Action on Dementia

(44) 131 225 14 53

(Kate Fearnley)

(44) 0800 317 817

Spain

Fundacion Alzheimer Espana

Beatriz Criado Garcia

(34) 1 344 18 30

ES - EN - FR

(34) 1 344 18 30

Sweden

Alzheimerföreningen i Sverige

Krister Wästerlund

(46) 46 14 73 18

SE - EN

(46) (0) 20 73 76 10

Sweden

Demensförbundet

Sten-Sture Lidén

(46) 8 658 52 22

SE - EN - DE - FR

(46) 8 658 52 22

(Stockholm)

* Key to languages :

English

Danish

Dutch

Finnish

French

German

Greek

Luxemburgish

Portuguese

Spanish

Swedish

Norweigan

GR
LU

1. Definition and Principles 8

1.1. What is an Alzheimer Telephone Helpline? 8

Definition 8

Principles 9

2. Models 10

2.1. Alzheimer Scotland – Action on Dementia 10

The Scottish Helpline Model 10

Advantages 11

Disadvantages 11

Budget 11

2.2. Association Luxembourg Alzheimer 12

The Luxemburgish Helpline Model 12

Advantages 13

Disadvantages 13

Budget 13

2.3. Alzheimer Society of Ireland 14

The Irish Helpline Model 14

Advantages 15

Disadvantages 15

Budget 15

2.4. Alzheimerstichting 16

The Dutch Helpline Model 16

Advantages 16

Disadvantages 16

Budget 16

2.5. Federazione Alzheimer Italia 17

Italy’s Pronto Alzheimer Helpline 17

Advantages 18

Disadvantages 18

Budget 18

2.6. Alzheimer Society of Finland 19

The Finnish Model of Dementia Counselling 19

Advantages 20

Disadvantages 20

Budget 20

3. Enquiries 21

3.1. Which enquiries should be made before starting an Alzheimer Helpline? 21

Training programmes for the operators 21

Information on the disease as such and on diagnosis 21

Information on services 22

Information on practical caring issues 22

Information on financial topics 22

Information on legal matters 22

Information on the organisation 23

4. Tools 24

4.1. What kind of tools are necessary ? 24

Registration form 24

Report form 25

Check-list or "Aide-Mémoire" 25

Reference book 26

Evaluation form 27

Guidance on handling calls 27

5. Recruitment and Training 28

5.1. How to achieve recruitment 28

Employees or volunteers ? 28

Requirements 28

How to recruit? 29

Advisers 30

5.2. How to train people 30

Who should be trained ? 30

Organisation of training 31

Budget implications 32

Basic training course outline 32

6. Data 36

6.1. Data Collection 36

6.2. Data Classification 37

6.3. Software Systems 40

Can this system be adapted for use elsewhere ? 41

7. Annexes 42

7.1. Annex I: Basic Training Course 43

Annex I.1: Sample Dementia Quiz 61

Annex I.2: Call practice scenarios 62

7.2. Annex II: Registration Form 63

7.3. Annex III: Report Form 64

7.4. Annex IV: Example of a Checklist - Aide-mémoire 65

7.5. Annex V: Material to be included in a reference book 66

7.6. Annex VI: Evaluation Form 67

7.7. Annex VII: Guidance on handling calls 68

Annex VII.1: Bomb Threat Call For 71

7.8. Annex VIII: Example of a Job Description 72

Dementia helpline volunteer 72

7.9. Annex IX: Enquiry Monitoring Form 74

7.10. Annex X: E.R.I.C. 75

Chapter 1

1. Definition and Principles

1.1. What is an Alzheimer Telephone Helpline?

Definition

The main characteristics of a helpline are the following:

· Accessible to everyone (carers, professionals, media and people with dementia, etc.)

· Confidentiality and the possibility of remaining anonymous

· Accessible 24 hours a day (optimal, perhaps even essential)

· Immediate help or advice at a low cost to the caller

An Alzheimer telephone helpline provides information, emotional support and assistance in making a decision, as well as serving as a guide and referring callers to more specific ways of support if necessary.

The main aim of an Alzheimer helpline is to provide a person to talk to, who knows the difficulties out of personal or professional experience. Therefore, the operator of the Alzheimer telephone helpline is willing to listen, immediately giving time and attention to the caller. This means of communication is assured solely by telephone and in an ideal situation on a 24 hour basis.

Principles

Helplines vary in their principles of operation, but most would agree with some or all of the following :

· The helpline’s first aim is to help the caller

· The helpline offers accurate information and referrals

· The helpline offers confidentiality and emotional support

· It aims to be non-directive and non-judgemental

· All helpline workers undergo helpline training

· Any other aims of the parent organisation, such as fund raising or increasing membership are not the main purpose of the helpline

· Callers may be family caregivers, relatives, people with dementia themselves, professionals, students or other people who are interested in dementia

· The helpline aims to help callers make their own decisions rather than to tell them what to do (empowerment)

The principles of the helpline must be kept in mind throughout the recruitment and training process. There are a number of different kinds of Alzheimer telephone helpline, four of which will be described in the next chapter. However, the aims and principles do not differ greatly between the models.

Chapter 2

2. Models

2.1. Alzheimer Scotland – Action on Dementia

The Scottish Helpline Model

The Dementia Helpline is a 24 hour service using a free-phone number. It takes approximately 2500 calls a year, giving direct access to information and emotional support for carers and families (70%), professionals (12%), students (4%), people with dementia or worried about their memory (3%) and others. It is supported by the Scottish Office as part of the core funding of Alzheimer Scotland - Action on Dementia, and by fund-raising and donations.

The Helpline is staffed by a team of 40 - 50 trained volunteers, based all over Scotland, plus a part-time Helpline Assistant. It is managed by the Information Officer, whose role includes recruitment, training, support and supervision of volunteers and staff and casework for complex enquiries. During office hours, calls are answered and information is sent out by Helpline volunteers and staff at Alzheimer Scotland - Action on Dementia's head office in Edinburgh. At night and over the weekend, calls are forwarded to volunteers' home telephones on a rota basis, using a diversion service provided by the telephone company.

The Helpline aims to offer a friendly, non-directive, non-judgmental and confidential service. All volunteers and staff are required to undertake a three day basic training course before answering calls. Each is provided with a manual of information materials, which is updated monthly.

Development

The Helpline was started in August 1989. At that time the organisation had a small number of staff, who began to feel that they were not always able to give callers the time they needed. At first, the Helpline was an office hours service, using volunteers who were trained on the job by the Information Officer. Later the same year it was decided to extend the service outside office hours. A group of volunteers was recruited and trained and a Helpline Assistant post was created. Calls were put through to volunteers’ home telephones on weekday nights, with an answering machine at weekends. Volunteers collected the calls from the machine every two hours and returned calls.

In 1991 new technology allowed volunteers to switch calls through to themselves from home, so the 24 hour service was extended to cover weekends.

In 1995 a donation from the Bank of Scotland allowed the Helpline to launch its free-phone service.

Advantages

· Using volunteers allows 24 hour cover relatively cheaply.

· Volunteers bring a wide range of caring and professional experience to the Helpline.

· Volunteers are dedicated to the Helpline during their shift and not distracted by other priorities when on the telephone.

Disadvantages

· Volunteers working from home are not easily supervised.

· Volunteers working at home need careful support, as they may become isolated.

Budget

The Dementia Helpline is not separately accounted for, so the budget below is estimated.

	ECU
Staff costs
Management	5651	Approx. 1/3 Information Officer post
Staff	6151	20 hours Helpline Assistant
Calls	2861
Training	572	Most speakers and venues free of charge
Information packs, postage	2861
Volunteer expenses	572	Travel, calls
Publicity	1073	Posters, cards
Overheads	3576	Includes elements for recruitment, admin. costs, office costs
	23317

2.2. Association Luxembourg Alzheimer

S.O.S. Alzheimer (24 hour telephone helpline)

The Luxemburgish Helpline Model

The telephone helpline service of “Association Luxembourg Alzheimer” operates from the geriatric day centre in Dommeldange. During the opening hours of the day centre (i.e. Monday to Sunday from 09.00 to 17.00) all members of personnel answer calls. If the telephone is not staffed, calls are transferred to a portable phone. A summary of the conversation is noted on a form.

Psycho-Social Service

Advice

Caller : Date of contact :

Advisor : Duration of call :

· Topic of conversation

· Kind of problem

· Particular event occuring during counselling

· Agreement with the caller (e.g. Advice given)

During the opening hours of the Dommeldange day centre all members of staff can answer calls (this includes the carer, educator, ergo-therapist, social worker and psychologist). In view of their long experience in this domain, the personnel have not been given specific helpline training. However, if a specific problem arises the call is transferred to the social workers or psychologist.

Outside the opening hours of the centre, the social worker and psychologist maintain the telephone service by means of the portable telephone on an alternating basis.

After a six-month trial period, Alzheimer Luxembourg envisages taking on volunteers to operate the telephone service. Training will be organised and a reference manual made available. The 24 hour telephone helpline service will operate with a combination of volunteers and professionals.

Advantages

· The helpline operates on a 24 hour basis.

· All members of personnel speak the usual three languages of the country

Disadvantages

Personnel are at the moment not specifically trained, but this situation will change in a few months when training will be organised and a reference manual made available

Budget

The helpline is operated by staff of the geriatric day centre. For this reason, costs for the helpline are not calculated separately.

2.3. Alzheimer Society of Ireland

The Irish Helpline Model

(a simple model based on the experience in Ireland)

In the early stages of general development of an Alzheimer Association, one of the main objectives is to reach out to affected and concerned individuals throughout your target area (country). This is generally achieved through an active PR and awareness campaign (direct mail, public lectures/meetings, radio interviews and press coverage). This exercise will put an organisation in contact with concerned and committed individuals who will offer their services and will act as a local contact/group (branch) representing the society locally.

In this way, it is relatively easy for a young society to build up a network of local contacts who will have local knowledge of both sufferers and facilities available in their area: In the experience of the ASI, one of the first services a local branch/group of the society will offer is phone help to anyone seeking it in that area and in so doing compliment the service offered by National Office.

Eventually this network of contacts (which will renew itself every couple of years, i.e. volunteers drop out and new people come forward) will form the basis of a 24 hour Helpline Service.

The costs involved in “recruiting” these volunteers are part of the general development of the Society. In the early stages the Alzheimer Society of Ireland was run entirely by volunteers, one of whom (the President) travelled to various areas of the country holding public meetings and generating local publicity and the only cost was expenses he incurred. Fourteen years later the Society now employs two National Development Officers whose brief is to liaise with existing branches, strengthening them and encouraging their development into Day Care and other relevant services.

As well as this large “team” of volunteers manning their own phones around the country, the National Office also provides a Helpline Service during office hours. The ASI has always had at least 1 voluntary “counsellor” who is available both in person (by appointment) and on the phone to offer help to whoever needs it. The staff can also refer callers to their local contact if they prefer to talk to someone locally and perhaps then attend a local Carers Support Group Meeting. Outside office hours the phone is answered by a machine on which callers can leave a name and number and the staff of ASI will get back to them soonest. The answering machine also gives callers a mobile phone number if they wish to talk to someone urgently.

Advantages

· It is easy to set up and organise

· It provides the basis for expanding the Helpline to a 24 hour service

· It provides people with a local contact which many of our carers prefer

· It is relatively cost effective

Disadvantages

· The network of volunteers is not in regular touch with each other and so there is not a uniformity of service.

· Formal training is expensive for volunteers spread all over the country and so has not been formally undertaken. Volunteers are “schooled” by one of our National Development Officers.

· An answering machine is not an ideal way to deal with someone in crisis.

· The mobile phone works well when it is in range but the signal is not always good and the line can therefore be of poor quality. It is also expensive for the caller.

Budget

There is no specific budget for the telephone helpline as any costs are part of the general costs of the Irish Alzheimer’s disease organisation.

2.4. Alzheimerstichting

The Dutch Alzheimer Telephone Helpline System

The Dutch Helpline Model

The Alzheimer telephone is not linked to the telephone exchange in the office but has a separate number. Calls are automatically transferred by 5 to 8 volunteers to the operator “on duty” by means of a switching system. The continuity of the helpline is assured by 25 - 30 volunteers who work from home and a paid staff officer who has final responsibility. The volunteers are all experts and/or experienced carers, who keep a notebook and send reports on specially designed forms to the Alzheimer’s office. Volunteers receive updated lists of helpful organisations, suggested reading and videos, along with a monthly “memory support” letter containing new or current information. There are also well-attended study days and lectures by and for the volunteers.

Advantages

· 24 hour service, 7 days a week (answered by real people; no answering machines);

· low cost for callers, who only pay for the initial connection with the Alzheimer telephone;

· volunteers can stay at home or be anywhere where a telephone is available;

Disadvantages

· high turnover as the unemployed find work and personal problems (such as deafness) intervene.

Budget

· subscription : 1 telephone line

· subscription : switching computer

· cost of calls which are switched through

· office expenses

· expenses for meetings, training, etc.

· hours of paid staff officer

In the Netherlands the Alzheimer telephone was budgeted for ECU 75,000 in 1997

2.5. Federazione Alzheimer Italia

Italy’s Pronto Alzheimer Helpline

Pronto Alzheimer Helpline is a 24 hour service which is operated during office hours by 2 members of staff and 5 volunteers and after hours as well as at weekends through an answering machine (calls are returned the following day). A switchboard is installed with four telephone lines.

The "Pronto Alzheimer" staff consists of two secretaries working Monday to Friday from 9 a.m. to 6 p.m. and the volunteers include family members as well as a psychologist, a lawyer and a social worker. Calls are answered at Alzheimer Italia office and a registration-report form is compiled for each call with information about the caller, the nature of call and the information required. Staff and volunteers use a reference book to refer callers to specific services, if requested. An information package and/or a letter with additional information, if required, are sent by post.

The aim of Pronto Alzheimer is to provide the callers with information about the disease, the existing services, how to cope with behavioural problems and to offer emotional support and help. Pronto Alzheimer has been operating since 1991 with one telephone line, one member of staff and one volunteer in the morning. Since 1993 an annual report has been made of the service: the number of calls received are as follows:

· In 1993 we received 1,437 calls from 1,293 callers;

· In 1994 we received 3,268 calls from 2,595 callers;

· In 1995 we received 5,209 calls from 3,487 callers;

· In 1996 we received 5,708 calls from 3,403 callers.

70% of the callers are family members, 10% health and social service personnel who asked for information, 1% an Alzheimer's patient him/herself or someone concerned about his/her health and 8% others (students, volunteers, associations, companies).

45% of callers requested general information about the disease, its development and possible treatments, as well as about drugs and information on where to get an accurate diagnosis or a follow up. 30% asked for health and social services as well as legal consultations and 35% wanted emotional support or just to talk with a person who knows by personal experience their problems.

To improve the service, in 1994 an evaluation form was sent to a random sample of 100 people who had called "Pronto Alzheimer", in order to evaluate its efficiency and to receive opinions about the service. Fifty-four completed questionnaires were returned.

Advantages

· It is relatively cheap;

· The people who answer are experts and/or experienced or trained by a tutor.

Disadvantages

It is operated by a person during office hours, but the answering machine which is used after hours and at weekends is not ideal: only 19 percent of callers leave their name, correct telephone number and are called back.

Budget

The budget for Pronto Alzheimer is not separate and therefore, we can only estimate:

· Telephone line

· Office expenses

· Paid staff

· Information pack, postage expenses

2.6. Alzheimer Society of Finland

The Finnish Model of Dementia Counselling

Dementia Counselling was started in 1992 at first in one local association of Alzheimer Society of Finland in order to support patients with dementia and their family caregivers. There has been an enormous demand for this kind of service and it has been rapidly expanding so that by the end of 1997 there will be 21 dementia counsellors working in Finland and their network will cover the whole country. Counsellors work in different local associations of Alzheimer Society of Finland and counselling has been provided in the form of projects

Counselling is aimed at people with dementia, their family caregivers, professionals and also those who are generally interested in this topic. The counselling service offers information, support and guidance and its main aim is to support home care in various ways. Counsellors work as experts in questions related to dementia. They plan, for example, appropriate care for people with dementia in co-operation with professional caregivers. The Alzheimer Society of Finland arranges ongoing education to counsellors four times a year and also co-ordinates the counselling service in general.

The Finnish model functions on a very holistic basis in that the telephone service is only one part of it. The telephone service is provided mainly during office hours. One very important part of this counselling service is home calls, in which a counsellor visits the home of a person with dementia in order to evaluate the situation there and to plan the help and support that is mostly needed.

At the moment there is a great challenge to consolidate this system as a part of our formal social- and health care system, because the financial support from the Slot Machine Association is going to come to an end in the near future.

Advantages

· All our dementia counsellors are professionals, most of them are registered nurses and they have good experience in this field

· An important part of the counselling service is education and training. All counsellors give lectures and provide education in their area to both formal and informal caregivers.

Disadvantages

The service tends to operate solely during office hours

Budget

The Slot Machine Association gives financial support to the counselling projects in different local associations, but this will eventually come to an end.

Chapter 3

3. Enquiries

3.1. Which enquiries should be made before starting an Alzheimer Helpline?

Before starting an Alzheimer telephone helpline it is necessary to make an inventory of likely questions and to look for the necessary information to provide appropriate answers. This selection of likely enquiries gives an idea of what you basically need to start an Alzheimer telephone helpline.

Most callers ask a very individual question that refers to a very personal situation. Standard questions and answers must at all times be avoided. The operator has to react in a personal way to the individual question. However the experience of the existing services teaches us that one is often confronted with more or less similar questions, that can be categorised. For some of these categories it is important to do a survey before starting an Alzheimer helpline.

Training programmes for the operators

· see Annex I for an example of a basic training course and section 5.2.4. for an outline of the main areas covered.

Information on the disease as such and on diagnosis

· articles and manuals on Alzheimer‘s disease

· articles and information on related disorders

· addresses of contact persons and diagnosis centres

· articles on diagnostics

· information on how a diagnosis is done (perhaps differences between different centres: e.g. clinic or hospitalisation)

· articles on the importance of early diagnosis

Information on services

· addresses and contact persons of different support centres and services (day care, respite care, nursing home, residential care centres, home nursing, home help, sitting services, social workers)

· additional information on specific support systems

· registration formalities, conditions, etc.

Information on practical caring issues

· articles, books, information on different approaches to caring, addresses and contact persons for professional help

Information on financial topics

· information on costs of support services

· information on social security benefits

· information on pension, etc.

· articles on social benefits and registration formalities

· addresses and contact persons for referral (municipalities, social security....)

Information on legal matters

· addresses and contact persons for legal advice

· information and articles on legal matters

Information on the organisation

· brochure and publication of the organisation

· addresses and contact persons for different branches

· information on activities of different branches

In order to have a more comprehensive base it is advisable to set up a group of experts for consultation on the helpline (legal advisers, doctors...). This group can serve just to inform and update the operators, but can also be referred to, after previous agreement, for individual callers.

All this information needs to be collected before setting up the Alzheimer telephone helpline. The list of likely enquiries is not exhaustive and needs adaptation to the local or national situation.

Chapter 4

4. Tools

4.1. What kind of tools are necessary ?

It would be useful to prepare specific tools to be used in the development of a helpline.

The aim of this section is twofold:

1. to make available, in a comparable European way, the existing information from the various existing helplines.

2. to help associations who want to start their own national or local helpline by providing them with expert information.

In order to do this, this section contains different parts and documents. All these documents are meant to be a basic guideline, adaptable and expandable for national or local application. The experiences of existing helplines will be made available in order that informed choices can be made. Only the registration form contains information needed for compiling statistics on a European level, to raise public awareness of the problems of Alzheimer patients and their carers through Alzheimer Europe.

Registration form

The model "registration form" (Annex II) contains information needed in order to provide statistics. If all European Alzheimer helplines provide the essential information, a European report will be made by Alzheimer Europe. The essential information is presented in bold. Additional information can be added according to national or local needs. Suggestions are made to obtain additional information.

The statistics based on this registration form can serve to raise public awareness and funds, etc. It is important to keep in mind a number of ethical matters, such as the use of data. It is generally considered inoffensive when no names are used. The use of callers' names and addresses for other purposes such as fund-raising and other matters affecting confidentially must be very carefully examined according to national legal requirements and the policy of the national association.

Report form

This form (Annex III) can be combined with the registration form. In fact it is an extension of part 4 "Action Taken" of the registration form.

The purpose of the analysis of this report form is to summarise any gaps in the information given, to deal with matters never previously raised and to provide answers to questions regarding new medications and matters raised by the media.

This analysis will be used for further training and up-dating volunteers and/or staff.

The matter of answering questions on medication and drugs, or the referral to specific doctors or specialists can lead to ethical problems. This needs further discussion on a national level since no European guideline is available.

Check-list or "Aide-Mémoire "

It is obvious that the operator can never use model answers, since the caller has a very specific and individual question and must be treated as an individual. Furthermore the first question raised by the caller is not always the question he/she wants to ask. Listening skills are very important in the training of operators.

However it may be useful to make an "aide-mémoire" for questions that are often raised. This "aide-mémoire" does not include a standard answer but merely serves as guidance for the operator in responding to the request.

This "aide-mémoire" can be presented on cards or software, depending on the stage of development of the organisation.

Annex IV provides an example of what an "aide-mémoire" could include. These cards need to be completed for likely questions and could be part of the reference book that will be discussed later.

It is very important that in the training and follow-up of operators these "aide-mémoires" or check lists are very clearly explained. The operator has to focus on the caller, what are his/her emotions, what does he/she already know on the topic, how can the operator fill in gaps in this knowledge, how can he/she help to explore the real problem, the possible solutions for that problem and how can he/she help the caller to make his/her own decision?

Reference book

A reference book (Annex V) helps the operator to respond accurately. It contains all kinds of information that can be of use in giving an accurate answer. The reference book needs to be compiled nationally or locally. We will only give a list of types of material that can be included in such a book.

It is important that the reference book is presented in a way that it can be updated. This is the basis for an adequate and correct answer by the operator. The update must be done regularly and can be combined with a training session for the operators.

It is essential to go through the updated information with the operators to be sure they are well informed.

Working with employees in a centralised office makes this update and training easier than working with local volunteers all over the country. The content of the reference book will probably be different for both groups.

Evaluation form

To be able to evaluate the work of the Alzheimer helpline, we have prepared a model evaluation form (Annex VI). This form will enable an additional evaluation to be made in addition to the analysis of the data collected with the registration and reference form.

This additional evaluation can be done by phone or by sending out a form. If it is done by phone it is advisable to ask the caller's permission during the initial conversation to ring him/her again.

The evaluation form should be kept short and easy to complete (ticking boxes rather than open ended questions). It is preferable to include a stamped return envelope.

It is important to evaluate the Alzheimer helpline regularly, not only the way of answering and referral, but also opening hours, training of operators, etc. This evaluation form is only meant as additional information to be obtained from the users themselves. A lot of evaluation will be done by analysing the registration and reference forms and by frequent discussions with the operators themselves.

Again one has to be cautious about national legal regulations, to write to or phone "anonymous" callers. The question raised earlier of having a database of callers and how to use this information must be taken into account.

Guidance on handling calls

Annex VII which is used by the Scottish Dementia Helpline is presented as a good example of how to handle the following difficult calls :

· inappropriate calls

· silences and silent calls

· suicide calls

· bomb threats

Chapter 5

5. Recruitment and Training

5.1. How to achieve recruitment

Employees or volunteers ?

Some helplines use paid staff, some use volunteers and some use a combination of both.

Advantages of employees:

· reliability and continuity

· may be professionally trained

· may have practical experience of dementia or of other helplines either professionally or personally

Advantages of volunteers:

· can offer the time that the caller needs

· may be professionally trained

· may have practical experience of dementia or of other helplines either professionally or personally

· lower cost, especially for helplines operating outside office hours.

Whether employees or volunteers are used, it is essential that there is a paid helpline co-ordinator. This person will manage the helpline, with responsibility for recruitment, training, supervision and co-ordination. This is not a suitable role for a volunteer, as continuity, accountability and reliable, high quality work are necessary.

Requirements

Essential for both employees and volunteers:

· Responsible attitude

· Good listener

· Good at giving clear information and at explaining complex information

· Open-minded

· Non-directive

· Ability to show empathy

Desirable:

· Personal experience of knowing or caring for someone with dementia

· Professional experience of dementia (essential for employees)

· Experience of counselling or telephone helpline work

How to recruit ?

A broad range of workers will help the helpline relate to the broadest possible range of callers. The recruitment process will depend on the policies of the organisation.

However, we make the following recommendations:

· Advertise widely through the organisation's newsletter and, for staff at least, in newspapers;

· Specify the above requirements in the advertisement;

· Specify that training must be undertaken;

· Application forms for both employees and volunteers should ask about personal and voluntary experience as well as professional experience;

· Interviews are important for both potential employees and volunteers;

· The training course can be used as part of the selection process for volunteers, if this is explained clearly to them before they sign up for it.

We recommend that all workers, including volunteers, are provided with a job description making clear their areas of responsibility[1].

If at the start of a helpline it is difficult to recruit sufficient workers, especially volunteers, it may be necessary to restrict the hours of opening at first. As the helpline begins to become known, recruitment may become easier.

Advisers

A panel of advisers should be recruited for the helpline. These will be experts in relevant fields, such as:

· old age psychiatry

· neurology

· law

· welfare benefits

· social work

· occupational therapy

· psychology

· nursing

These advisers will be asked to deal with complex queries passed on either directly by helpline workers or through the helpline co-ordinator, and to ensure that the helpline is kept up-to-date on developments in their fields.

5.2. How to train people

Who should be trained ?

We recommend that all employees and volunteers working on a helpline undergo training before they answer the telephone. This includes people who have a high degree of professional or personal knowledge, because:

· The organisation is responsible for the helpline and must be certain that information given is accurate and that all workers abide by the principles of the helpline.

· Well-informed professionals may have a tendency to tell people what to do rather than help them to make their own informed decisions; they may also have surprising gaps in their knowledge or have a tendency to identify too closely with the caller.

· Experienced family caregivers may also have gaps in their knowledge or have a tendency to identify too closely with the caller.

· All participants in training benefit from the experience of other participants.

· A basic training course should allow helpline workers to meet each other and start to feel part of a team.

Some professional or family caregivers are resistant to the idea of training. We recommend that if a potential employee or volunteer is not willing to take part in training, he or she is not recruited.

If it is not possible to organise training immediately, for example, when a professional employee starts work and there is no course he or she can join, training should be arranged as soon as possible. We recommend that only in very exceptional circumstances should a volunteer be allowed to answer the helpline before training. In our experience, untrained volunteers can do more harm than good, both to the caller and to themselves.

Organisation of training

Helpline training is in two parts: a basic training course (Annex I) at the start and follow-up or advanced training regularly throughout the year to update workers and give them a chance to exchange experiences and ideas.

Basic training should equip all workers with the following skills and knowledge:

· Basic counselling skills (some workers may be accredited counsellors, but for most helplines, most workers will need training in these skills);

· Principles of the helpline;

· Money and legal issues;

· Medical aspects of dementia;

· Caring aspects of dementia;

· Caregiver burden;

· The Alzheimer organisation - what it does and how it works;

· How to find local services and support;

· How to understand people with dementia and their behaviour;

· The needs of family caregivers.

If the course is run for volunteers, it is important to consider arranging the timetable to allow them to attend as easily as possible. This may involve training at weekends or in the evenings.

Advanced training should cover whatever skills and information are identified by helpline workers and the co-ordinator as a training need. Sample topics might include:

· Current research - caring or medical;

· Coping with challenging behaviour;

· Our own resources, strengths and weaknesses in counselling/using counselling skills;

· Quality issues in dementia care;

· Updates on welfare benefits, community care or the law.

Advanced training should take place at least four times a year. It may be single days, two day events, or perhaps more frequent afternoon or evening sessions, depending on the distribution and availability of the workers.

Budget implications

All helplines are advised to include the costs of training workers in their budget. These costs will vary for each helpline, but may include:

· Hiring a venue.

· Paying guest speakers or speakers' expenses.

· Volunteer and employee expenses.

· Employee time.

Basic training course outline

Introduction

This outline is based on the basic training course (see Annex I) of the 24 hour Dementia Helpline of Alzheimer Scotland - Action on Dementia.

It is our recommendation for a high quality basic training course. However, it can be amended or selected from to suit local requirements.

The course is designed for all helpline staff and volunteers. It is modular and can be run, for example, as a series of seven four hour sessions, an intensive three day course or if resources permit, over four full days. Many of the sessions could be taken in a different order. Timings are approximate, and different courses may give more or less weight to particular sessions. It covers the basic issues relating to dementia, carers and telephone counselling skills. Practise calls are central to the course.

After completing the course, workers may answer calls. It is recommended that helplines consider how to supervise volunteers and monitor their performance during a three month probationary period. In a helpline based in one office, workers should be listened-in to for their first shifts until both supervisor and worker are confident. In a helpline where volunteers are based at home, such as in Scotland, supervised calls are not possible. For this reason it is recommended that test calls are given to each worker to evaluate their performance during the probationary period. It is important for ethical reasons that if test calls are to be used, all workers understand this before they start training.

The course is suitable for groups of between 6 and 12 participants. The main areas covered are as follows :

Ø Welcome

Ø Icebreaker

Ø What is the Helpline for ?

Ø About the organisation and the helpline

Ø Introduction to dementia

Ø Dementia : Diagnosis, effects and causes

Ø Listening skills

Ø Starting to respond

Ø Open and closed questions

Ø Empathy

Ø Community care / How to get services

Ø Information resources and referrals

Ø Family carers of people with dementia and caregiver burden

Ø Welfare benefits

Ø Coping with challenging behaviour

Ø Confidentiality

Ø Call recording

Ø Dementia & the law

Ø Volunteering

Ø Support systems

Ø Inappropriate and difficult calls

Ø Ending a call

Ø Practical details

Ø Call practice

It is recommended that you provide participants with written handouts whenever possible.

Aims of the basic training course

· To enable helpline volunteers to give a good service to callers.

· To improve and share existing skills and knowledge of helpline volunteers.

· To increase the resources available to helpline volunteers.

· To provide a forum where helpline volunteers can share and discuss their ideas and experiences.

Chapter 6

6. Data

6.1. Data Collection

Some organisations will not have access to, or want to use, computers. However it will still be important for those organisations to keep a record of enquiries because:

· It will enable you to assess what is happening in your organisation as part of the evaluation process.

· You will know who is contacting you, what they are asking, what area they are from, and whether there are any gaps in your provision.

· It will enable you to refer back to an enquirer’s details at a later date.

· Any form used to record enquiry details should be carefully designed:

· To get as much information from the enquiry as possible, without being intrusive

· To be easily understood by anyone else who may need to have access to the information

· To make it easy for you to produce statistics

The form (see Annex IX for example) should allow you to record

· An identity number for each enquiry

· The method of contact (telephone, letter, personal visit)

· How the helpline number was obtained

· The type of caller (enquirer)

· The nature of the enquiry

· Name and address

· Action to be taken

· Date of enquiry

· You may also want to have a section for taking additional notes about the enquiry

· You may also want to record the length of the call

6.2. Data Classification

It is likely that most statistical analysis will focus on the type of caller, and the nature of enquiry. For statistical purposes, it is useful to divide both of these areas into categories, which are then used by all helpline operators. It is also much quicker to write down a code, for example “AB” than it is to write down “friend of someone with dementia”.

If we are to share statistics between our respective organisations across Europe, then it is important that we are using the same broad categories.

The working group have suggested that callers (enquirers) be broken down into seven broad categories:

A. Carers

This could be any family member or friend caring for someone with dementia. It would also include family and friends who are not the primary carer, but who share the carer’s concerns. This does not include people paid to care or volunteers from a charity.

B. Person with dementia

C. Someone concerned with dementia

This would be someone worried that either they, or more usually someone they know, may be developing dementia.

D. Professional

This could be anyone with a professional interest in dementia, and may include doctors, social workers, charity workers, volunteers, paid care workers, residential homes, schools, etc.

E. Student

Any student, whatever age or level.

F. Media

Television, newspapers, etc.

G. Miscellaneous

Of course you may wish to add broader categories depending on the situation in your country. The Alzheimer’s Disease Society in England, for example, have additional categories for their own branches and regional officers and a category for enquiries from businesses. However, it is important that any additional broad categories do not “cross over”, or become confused with those listed above.

It is envisaged that these will be treated as broad categories, and that each country will want to develop its own sub-categories within each, depending on its own needs. For example, the Alzheimer’s Disease Society in England divide category A (Carers) as follows:

BROAD CATEGORY	SUB CATEGORY
A. Carers	AA Primary Carer (family or friend)
	AB Other family / friend

Thus, a call from a primary carer will be classified as “AA”

These sub-categories will not suit everyone. The notion of “primary carer” may seem fairly alien in some countries where caring may be shared among the family, but in England it is usual for one person to assume overall responsibility for caring within the family.

The working group have suggested that the “nature of enquiry” be broken down into seven broad categories:

A. Information about your organisation

This could include requests for your publications, details of the services you offer, or someone wanting a local contact for your organisation.

B. Dementia and Alzheimer’s disease

This could include requests for information about anything from Alzheimer’s disease to CJD, symptoms, prevalence, etc.

C. Outside Services

This could include requests for information about the kind of help people need which is not provided by your organisation, such as healthcare, residential care, occupational therapy, etc.

D. Practical Caring Issues

This would include requests for information about dealing with the practical aspects of caring for someone with dementia (how to cope with wandering, aggression, incontinence, and so on).

E. Emotional Support

This could include people expressing or experiencing strong emotion, or perhaps people who you feel just needed to talk to someone, even if they didn’t actually say so.

F. Legal and Financial Issues

G. Miscellaneous

Of course, a single enquiry could contain more than one type of question, and may cover several issues.

Again, it is envisaged that these will be treated as broad categories, and that each country will want to develop its own sub-categories within each, depending on its own needs.

6.3. Software Systems

One of the tasks of Alzheimer Europe was to suggest a model for a software system which could be used to speed up the flow of enquiries, and enable organisations to produce statistics.

In England, the national office of the Alzheimer’s Disease Society use a system called ERIC.

ERIC, is a computer system which records detailed information about individual enquiries to the information department. The system then produces personalised letters for each enquirer, and allows for the quick and easy production of statistics. Every single enquiry to the department is stored in the computer and can be recalled instantly.

The essential components of ERIC are:

A database :

The Alzheimer's Disease Society uses PICK, which is on its large main server computer at the national office. Enquirer’s details are stored here.

A word processor :

The database downloads information to a word processing package, which then uses mail-merge to create personalised letters for enquirers. The Alzheimer's Disease Society uses Word for

Windows 6.

A spreadsheet :

While some databases such as Access are able to produce statistics and perform fairly sophisticat