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Beyond Crowd Control

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					                                          Beyond Crowd Control
                                           A wholistic approach to running
                                           effective groups for people with
                                           dementia

                                           Julia-Ann O’Keeffe
                                           Lynette Outridge
                                           Chris Shanley
                                           Kate Russell




             cera                           Developed by the Kalparrin Centre and the Centre for

             CENTRE FOR EDUCATION
             & RESEARCH ON AGEING           Education and research on Ageing with funding from the


                                            Commonwealth Department of Human Services and Health

                        A NATIONAL
                        ACTION PLAN FOR     as part of the National Action Plan for Dementia Care.
                        DEMENTIA CARE




NOTE: This pdf file has been created by scanning and OCR from the printed document.
The layout, fonts and graphics used here try to match the original document, but there
will be minor differences between the two versions.
Contents                                                    3
Foreword                                                    4
Acknowledgments                                             5
Background to the manul                                     6
Using the manual                                            7
A word about definitions                                    8

Section I The big picture
1.1    Understanding dementia                               9
1.2    A wholistic approach to dementia                    13
1.3    Why run groups for people with dementia?            15
1.4    How dementia may impact on groupwork                16
1.5    Aspects of group process                            18
1.6    Considering your leadership style                   23
1.7    Running groups in different settings                24

Section 2 Building a program
2.1    Assessing clients' needs, abilities and interests   27
2.2    Setting goals and objectives                        30
2.3    Basic principles in activity programming            31
2.4    Activities A - Z                                    34
2.5    Adopting activities to suit clients' needs          35
2.6    Working within available resources                  38
2.7    Making a contingency plan                           39
2.8    Planning and conducting outings                     40
2.9    Pulling it all together                             42

Section 3 Running an effective group
3.1    A practical overview                                45
3.2    Challenges which may arise                          49

Section 4 User-friendly evaluation
4.1    Why evaluate                                        59
4.2    Day-to-day evaluation                               60
4.3    A checklist to promote good practice                63

Section 5 Building the team
5.1    Working as part of a team                           69
52     Getting support from decision makers                71
5.3    Supporting carers                                   73

Section 6 Resources
6.1    Books and videos                                    75
62     Organisations offering support                      78
6.3    Questionnaire on leadership style                   79
6.4    “This is your life" client profile                  81
6.5    Outing/venue assessment form                        82
6.6    Example of a four week active program               83
6.7    Specific activity outline form                      84
6.8    Kalparrin Centre Principles of Good Practice        85



                                     page 3
Using this manual
This manual aims to:
l promote high quality groupwork for people with dementia
l provide information about dementia and how the effects of dementia may
  impact on groupwork
l help people feel more confident about running groups
l provide practical information and suggestions that will make groups more
  enjoyable and effective.

The manual is divided into six sections.

Section 1 - The big picture
Provides an overview of dementia, outlines a wholistic approach to working with
groups of people with dementia, and introduces important concepts about
groupwork.

Section 2 - Building a program
Describes how the group leader con design o program to meet the particular
needs of a group; it includes information on adapting activities, outings and
working within available resources.

Section 3 - Running an effective group
Provides some tips on running groups and then takes a close- up view of how the
group leader can work creatively with some of the most common difficulties that
come up day-to day.

Section 4 - User-friendly evaluation
Provides some suggestions of how to use feedback so the group is able to
improve and gain from past experiences.
Section 5 - Building the team
Describes ways of strengthening the team, gaining support from the decision
makers in the organisation and working with carers.

Section 6 - Resources
Provides a list of books and videos, contact details for some of the key
organisations that can assist with the program, examples of forms that con be
used in planning and running programs and a copy of the Kalparrin Centre
Principles of Good Practice.
1.1




                                                                                  section one
Understanding dementia

What is dementia?

Dementia is a broad term used to describe the loss of a person's
cognitive abilities and a deterioration of social functioning or behviour.
When a person has dementia the changes in their brain reduce their
ability to remember, to think and to cope with more than one piece of
information at a time. People with dementia experience changes to
their physical, mental and emotional functioning which effect their
ability to work, to be involved in social activities, to relate to people, to
communicate and to care for themselves. Dementia is a collection of
symptoms rather than a disease in itself.




                                                                                the big picture
What it is not
Since dementia is a poorly understood condition there is lot
misinformation about it, even amongst health service providers.
Contrary to popular myth, people with dementia:
l  have not just 'let themselves go' and become lazy
l  are not insensitive to how people treat them
l  are not contagious
l  are not mad or evil
l  are not uncontrollable dangerous
l  are able to enjoy life.

Some people believe that dementia is a normal part of ageing and that
everyone will get it if they live long enough. This is not true. While
dementia is more common in older age groups, most elderly people
do not have dementia.

It is important to be aware that many people are alarmed to hear that
someone has dementia. They fuel unsure about how they should
behave with this person and so put up a brick wall between
themselves and the person with dementia.

Staff running groups for people with dementia are in a good position to
correct a lot of the misconceptions about dementia. They are also
able to demonstrate appropriate ways of relating to and caring for
people with dementia.



                                   page 9
1.2
A wholistic approach
to dementia care
A philosophy of care
An effective group program for people with dementia takes more than
just finding interesting activities to run. It is more about working out
what people need and setting up the support systems required to
make it happen.

The first step is to be clear about the underlying philosophy of the
organisation, as this will influence all aspects of how the program is
developed and implemented.

The philosophy of care that underpins both the work at Kalparrin and
the contents of this manual is set out below.



                         Philosophy of care

      Clients are cared for in a way that promotes their well
      being, dignity and self-esteem.

      A structured program is designed to meet the needs of
      the clients, and their carers, and also takes the needs of
      the staff into account.

      Staff show respect for the client’s life-time work.
      personal worth and cultural background.

      Carers are involved in all aspects of client care.

      The environment is calm, consistent and structured so
      that people are not over-stimulated, and are more
      easily oriented to their surroundings.

      Staff work together as members of a team.

      Staff behave in a way that would be safe for clients to
      mimic.




                                 page 13                                   Beyond Crowd Control
                       A framework of care
                       Building an effective program has many aspects which need to be considered. The
    the big picture

                       task becomes rather like assembling a jigsaw puzzle. The main pieces of this
                       puzzle, identified by staff of Kalparrin, are:



                                                                                      worker
                                                                                    attributes,
                                     social                     physical
                                                                                   training and
                                  environment                    setting
                                                                                     support




                                                           activity                  carer
                                    client
                                                           program                   needs
                                    needs




                       When planning a group program, the leader needs to make sure that each of these
                       pieces of the puzzle is in place. A beautifully prepared activity is simply not going to
                       work if the social environment is full of distractions or if staff are unaware of the
                       needs of the clients.
    section one




                       A full description of the framework developed and used at Kalparrin can be
                       found in Section 6 - Resources.




Beyond Crowd Control                                  page 14
1.3
Why run groups
for people with dementia?

We all need to have meaningful activity in our lives, to feel that we are productive
and to express ourselves. This gives us a feeling of personal worth and dignity,
which is the basis of health. We also need to feel connected to a network of
people.

People with dementia con benefit from being involved in well designed group
activities. An effective program helps people to maintain the skills that they still
have. There is a lot of truth in the old saying 'use it or lose it’. If tasks are suitably
graded towards ability level, people experience success and feel a real boost to
their self-esteem.

If the group is part of a familiar routine, it will help to reduce the clients' confusion
and anxiety about where they are and what is happening. It will give the clients
an outlet for their restlessness and provide them with support and social
interactions that help them to feel that they belong.

If the environment is relaxed and welcoming, the client is more likely to feel
comfortable about being in the group. Groups can also be a major source of
enjoyment and companionship, reducing feelings of isolation and discontent.

In the past group programs have been a form of 'crowd control'. Management
has wanted clients to be kept occupied and under control so that staff can get on
with the 'real business' of the day - such as organising medication, bathing,
meals, paperwork and keeping the building clean.

The current trend towards using groups has evolved as health professionals
have identified the positive aspects of groupwork. This has led to groupwork
being seen as a crucial part of a quality care program for someone with
dementia.




                                   page 15                                    Beyond Crowd Control
                  1.4
the big picture
                  How dementia
                  impacts on groupwork

                  The leader of the group program will need to fully appreciate how dementia
                  may effect the way that an activity group will run so that they can anticipate and
                  avoid some of the difficulties, and design a program that will address people's
                  needs.


                  Changes in styles of communication
                  There are some major changes to how people communicate when they have
                  moderate OF severe dementia. They may have great difficulty both
                  understanding what is being said and getting their own message across. A
                  person from a non-English speaking background may revert to their native
                  language. They may no longer follow the accepted ways of conversing - they
                  may ignore people or interrupt them and become overly self-centred.

                  The reasons why people with dementia may become more self-centred are:
                  l  they may need to keep attention on themselves just to keep a grasp on
                     reality
                  l     they may become less aware of the subtle social cues about how to
                        behave
                  l     they may become stimulus-responsive i.e. have to speak to each new
                  l     person as soon'as they see or hear the person.
section one




                  Even though their ability to communicate is impaired, a person with dementia
                  still needs the comfort, intimacy and reassurance provided by conversation.

                  As dementia progresses, the person will increasingly rely on body language to
                  communicate. This means that people around them will need to become
                  adept at 'tuning in' to the non-verbal messages of the client. Effective group
                  leaders become sensitive to the feelings that clients are demonstrating.

                  It is important not to make sweeping generalisations since each member of
                  the group is an individual and may be functioning at a slightly different level,
                  and communicating in their own particular way.

                  Staff and carers also need to be aware of their own non -verbal
                  communication - the messages that they are sending through their posture,
                  tone of voice and eye contact. If a staff member is over-worked or impatient,
                  their manner and their body language can easily make the members of The
                  group agitated or resistant to joining the group.


 Beyond Crowd Control                              page 16
Physical impairments

Most people with dementia are elderly which means that many of them may also
have other physical health problems. If the person is being treated for another
condition, their physician has to take care to choose drugs that do not adversely
effect the problems with their memory and thinking.

A person's physical impairments may mean that they are bed-bound or restricted
to a wheelchair, which may reduce their ability to be involved in some of the
activities of a group program.

A person who is restricted to a wheelchair or o bed still needs to maintain their
skills, to have the comfort of conversation and social interaction and to enhance
their own self-worth. Group leaders need to work within the constraints of the
situation and create opportunities for people with physical impairments. This may
involve moving several beds closer together so that people can interact or
choosing activities that people can do from their wheelchair.


Other considerations

Some of the group approaches that are often used in society do not work for people
with dementia. People with dementia may find it confusing and stressful to be given
a lot of choices and asked to make a decision. There is no point in confronting
someone if they ore not aware that their behaviour is inappropriate in o particular
situation. If a person does not remember what they have just done, it will not
improve things if you ask them to change their behaviour. Their behaviour may be
outside their voluntary control.

People with dementia can only cope with limited responsibilities. They may not be
able to communicate their needs very well. The group leader will need to notice
when people are tired or cold or worried about something. Some of the other
difficulties that need to be considered are discussed later in Section 3 - Running
an effective group. They are:
l   forgetfulness
l   wandering
l   lack of initiative
l   restlessness
l   repetitive behaviour
l   refusing to attend or participate
l   aggressive behaviour.




                                 page 17                                 Beyond Crowd Control

				
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