“Strategy” and the “operational” model in planning a project for coping dementia in family and social field
VIRVILIS S., BALOYANNIS S.
Aristotle University of Thessaloniki, A’ Department of Neurologie, AHEPA Hospital, Thessaloniki, Greece

Summary
Dementia as it is a very complicated problem, it needs to be faced with a complicated project, with three directions: (a) the patient, (b) the caregivers and (c) the society/community.

Planning such a project, a lot of parameters must be taken in mind like the potentials, the organization, the cultural and life style conditions of the local society, the capabilities of the state or the local government, the economics etc. Basic conditions are also the specification and clear determination of the roles, the priorities, the targets, the program and the way of performance and intervention, in cooperation with the caregivers and the services of the state or the local community.

Final target of such a project is:

a) to prevent or delay institutionalization for people with dementia and
b) to ameliorate the quality of life, not only for the patients but for the caregivers as well.

Key words: Alzheimer’s disease, dementia, caregivers, quality of life.

Introduction

Thinking about dementia we usually focus on the disease and on the patient. But dementia is a systematic problem and the suffering system is first of all the family and of course the society itself (relatives, working environment, social surrounding, and the community). Considering the quality of life in dementia we have to turn our interest not only at the patient's quality of life but at the caregivers' as well. It is well known that the impact to the family - community - society is medical, psychological, financial and social. It overbalances and disorganizes the family's plans and functions and causes a lot of problems among the members of the family/caregivers.

Facing and coping with such a serious problem we have to organize programs and projects to carry out our duty effectively.

The presentation of the following model of a project in coping dementia comes as a result of experience and speculations after eight years of participation in the anti-dementia team of the 1st Departement of Neurology of the Aristotle University of Thessaloniki (AHEPA Hospital).

This model is summarized in table 1.

I. ORGANIZING THE PROJECT

At the beginning is the problem. When dementia starts, the patient him/herself or the members of the family have to run for help to a qualified service or team. The sooner, the better. It will be easier for them if they have already been informed about the disease. Press, (newspapers, magazines), TV, radio are the common means responsible to inform and familiarize the public with this specific problem.

The qualified personnel start collecting information.

A. General information about the disease, the recent progress of the science concerning the specific field of research etc.

B. Specific information about:

  1. the patient
    a. general physical condition
    b. cognitive condition
    c. psychological condition
  2. family/home
  3. social surrounding of the patient

All those information and data have to be concentrated, analyzed and processed. Then they have to be divided and distributed according to responsibilities into medical and paramedical team and non medical team. (Of course under the coordination of somebody who is qualified for that, who usually is the director of the team or the clinic.)

The medical and paramedical team consists of GP, neurologist, psychiatrist, gerontologist, clinical psychologist, nurse.

The non medical consists of the social worker, budget organizer, archives, statistics, public relations, and informatics.

Cooperation between the two teams is more than necessary.

Next stage is the synthesis of the data collected from the case history of the patient, the clinical examination by the experts, the study of the Para clinical examinations and the information from the non medical team.

Then comes the clear determination of:

TARGETS - PRIORITIES - ROLES - PROGRAM

Targets

A. PATIENT

  1. Coping with other physical health problems
  2. Coping with dementia
  3. Pharmaceutical treatment
  4. Psychological estimation
  5. Retraining in every day's activities

B. FAMILY MEMBERS

  1. Information - Briefing
  2. Training
  3. Coherence
  4. Psychological support

C. ENVIRONMENT OF LIVING/NURSING

D. WORKING BACKGROUND

  1. Patient
  2. Relatives/Caregivers

E. SOCIETY

Priorities

A. DEALING WITH THE GENERAL HEALTH CONDITION OF THE PATIENT

  1. Main problem (dementia)
  2. Other health problems or illnesses

B. ENVIRONMENT OF LIVING/NURSING

C. WAY OF LIVING/NURSING

D. (RE) ORGANIZATION OF THE ENVIRONMENT

E. RETRAINING THE MEMBERS OF THE FAMILY/CAREGIVERS IN:

  1. Facing reality
  2. Behavioral techniques

F. PSYCHOLOGICAL SUPPORT FOR THE MEMBERS OF THE FAMILY

G. INFORMATION - FAMILIARIZATION OF THE PUBLIC

Roles

A. NEUROLOGIST

B. PSYCHIATRIST

C. PHYSICIAN OR G.P.

D. CLINICAL PSYCHOLOGIST

E. SOCIAL WORKER

F. CAREGIVERS

G. SOCIETY

Program

FLEXIBLE, ACCORDING TO THE NECESSITIES COMING FROM:

A. THE TYPE OF DEMENTIA

B. THE STAGE OF DEMENTIA

C. THE SYMPTOMS OF DEMENTIA

D. THE RATE OF WORSENING

E. THE CONDITIONS AND ENVIRONMENT OF LIVING/NURSING

F. CULTURAL BACKGROUND OF THE FAMILY AND THE LOCAL SOCIETY

II. RULES, PARAMETERS AND STAGES IN PLANNING AN ANTI-DEMENTIA PROGRAM

A. IDENTIFICATION OF THE PROBLEM

  1. Public
  2. Medical community

B. EARLY RUN FOR HELP TO THE SPECIALISTS AND COOPERATION WITH THEM

C. SPECIFICATION, STUDY AND ANALYSIS OF THE FACTORS ENTERING INTO THE FORMATION OF ENVIRONMENT AND LIVING STYLE OF THE PATIENT

  1. PATIENT
    a. Sex
    b. Age of members
    c. Profession
    d. Educational level
    e. Social-cultural level and life style
    f. Social conditions of living
    g. Autonomy of living level
    h. Comorbidity
    i. Personality
  2. FAMILY
    a. Number of members
    b. Age of members
    c. Profession-occupation
    d. Educational level
    e. Social conditions (education level, sociability, free time activities)
    f. Economic conditions
    g. Psychological profile
    h. Living style
    i. Home/environment conditions

D. REVISION OF THE "TILL NOW" PHILOSOPHY OF LIFE AND LIFESTYLE AND ACCEPTANCE OF THE NEW DATA

E. RECOGNITION, DETECTION AND FOCUSING ON THE NECESSITIES:

  1. OF THE PATIENT
    a. Conditions of life
    b. Sleep
    c. Personal sanitation
    d. Nutrition
    e. Occupation
    f. Drugs - medication
    g. Nursing (if/when necessary)
  2. OF THE FAMILY MEMBERS
    a. Job - occupation
    b. Psychological balance and peace
    c. Free time
    d. Social activities
    e. Interpersonal relations

F. DETERMINATION AND ORIENTATION OF THE ROLES

  1. Patient
  2. Family members/caregivers

G. COOPERATION AMONG THE FAMILY MEMBERS AND DISTRIBUTION OF THE ROLES ACCORDING TO:

  1. Sex
  2. Age
  3. Job-occupation
  4. Free time
  5. Obligations

H. CONSIDERATION AND STUDY OF THE INFLUENCE OF THE DISEASE AND THE PATIENT FROM AND TO THE SOCIETY ACCORDING TO:

  1. Profession
  2. Position in the community
  3. Responsibility level

I. PERFORMANCE

J. FEEDBACK (according to table 2).

III. DIRECTIONS OF ACTING FOR THE THERAPIST OR THE TEAM

A. COLLECTING INFORMATION

  1. General
  2. Specific
    a. for the patient
    b. for the caregivers
    c. for the system (environment, social, local society)

B. SUPPORTING

  1. Patient (Medical care-medication-nursing)
  2. Family/Caregivers
    a. Supply with information
    - for the disease
    - for the treatment
    - for the evolution of the disease
    - for the perspectives
    - for the rights of the patients and of the caregivers
    - for the possibilities

C. INTERVENTION

  1. GENERAL INTERVENTION (LOCAL SOCIETY)
  2. SPECIFIC INTERVENTION IN THE FAMILY
    a. in acceptance of the new data (problem)
    b. in understanding the particularities of the patient
    c. in changing and adjustment the way of living according to the new data
    d. (Re) Training in
    - Nursing techniques
    - Behavior techniques (to the patient and to the members of the family)
    - Every day's individual activities
    - Occupating the patient (keep busy)
    - Self care
    - Problem solving
    - In sharing out the roles among the members of the family
    - In understanding, learning and using the body language
    e. Psychosupport
    - Information-briefing
    - Contact with other caregivers
    - Teaching anti-stress techniques
    - Teaching cognitive and behavioral techniques
    - Help for removal of feelings of guilt

CONCLUSION

The effects of the presence of a demented person in the family are well known as labor, economic, social and psychological. Some of the psychological disorders or symptoms appearing among the members of a demented person's family are:

Anxiety, irritation, anger, depression, doubt, embarrassment, speculations, desperation, fear, feelings of guilt, loneliness, shame and many others. They discourage them and spoil the conditions of balance in the family.

We believe that the implication of such a project, well prepared and well carried out would ameliorate the quality of life of family members or the caregivers of demented people in many parameters such as:

and finally would prevent or delay institutionalization for people with dementia.

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