An illustration of long-term care of severe brain injured adults

Day Care Center

Day Care Center

La BraiseTransportsLa Braise

Transports

Support ServiceSupport Service

Resources Center

Resources Center

Cognitive RehabilitationCenter

Cognitive RehabilitationCenter

La BraiseLa Braise

RespiteServiceRespiteService

Population concerned

Adults (18-65 years old) Non-progressive acquired brain injury (head trauma,

stroke, ...) Severe bain injury (medical criteria+ significant

impact in daily life) Long term care/management

Most frequent sequelaes

Neuropsychological Communicational Emotional Behavioural Anosognosia Physical Sensorial Fatigue Slowness

CENTERDay Care RESPITE

SERVICE

About thirty adults (aged 18-65 years) with acquired and non-progressive brain injury (TBI/stroke)

long term day care with no restriction of duration

personal, family and social support of brain injured persons by focusing on quality of life and community outreach.

Opened in August 1995CENTERDay Care

Multidisciplinary team Group activities and individual therapies

(cognitive, creative, activities of daily life, communication, emotional, physical)

Research, implementation and use of means of compensation

Working with families

CENTERDay Care

SERVICESupport

CENTERRehabilitation

Cognitive

–About fourty brain injured adults and teenagers (from 12 years old)

– Individual support. Concrete support in family life of the person : Administrative and/or financial assistance, housing search, help in managing the activities of daily living, home adaptations to cognitive difficulties, development of human and material aid, social and professional reinsertion.

Opened in September1998SERVICESupport

– About ten adults (16 to 65 years old) with brain injury

–Day rehabilitation program funded by INAMI for a period of maximum 3 years (beyond the initial 2 years of rehabilitation)

– In the presence of sufficient potential of evolution towards a social, familial and/or professional reinsertion.

CENTERRehabilitation

Cognitive Opened in January 2002

Objectives

Quality of life (cf Qolibri) Maximal participation (cf CIF model) Autonomy (cf Mhavie, satisfaction degree) Self-confidence, revaluation of the self-image

(reintegration, volunteering) Personal, familial, social, professional

fulfillment Mourning, (re)construction of the project.

Means

A comprehensive approach The brain injured person, his family system, his

past history, his path since the accident (neuro systemic approach)

An environmental approach Practical situations, the closest to their daily

life, ideally in life environment of the person A coherent multidisciplinary approach

Within the team (educators, neuropsychologists, speech therapist, occupational therapist, physiotherapist, social worker, responsible for integration) and the broader network (external contributors)

•Principles–Continued feedback• Classical, ecological, observation checklist, simulations,

training/internship– System of contracts, assesments, targets–Metacognition • Having the person become an expert of his injury

– Impact of the group of peers–Working with family–Respect the individual pace (mourning, resilience)–Consider the affective experiences (solitude,

sexuality)

Service Répit pour les proches

de personnes cérébro-lésées

en situation de grande dépendance

La Braise

SERVICE RESPITE

–Occasionally relieve relatives of brain injured person in situation of high dependancy (requiring the continuous presence of a third party)

– Reassuring presence at home, individual excursions, integration in group activities.

Opened in 2009

• Tool for :– Acquired brain injured persons (traumatic brain injury,

stroke…) ,– Their relatives,– Professionals working with them,– Public

Opened in september 2005

CENTERRESOURCES

Need for fondness, a lasting relation, complicity, projects, trust and mutual respect.

Mutual help and support

Dialogue

Confidence

Patience

Importance of loving and being loved

Know that someone is relying upon oneself

Importance of a loving look on oneself

Sexuality : all behaviours related to the sexual instinct and its fulfilment.

Sexuality within the relation.

Asking for sex or for love?

Sexual assistant: prostitution or service?

Ethics (moral) : non-discrimination and respect of the other

In the Belgian law, prostitution is not an infringement by ityself. It consists in proposing or accepting, in exchange for payment or a material advantage other than affective, physical contacts of any kind, which aim at satisfying sexual needs or pleasures.

Recruitment – running or renting a house of prostitution

Exploiting the the prostitution of others

Street walking

Advertising prostitution

1. The sequelae

2. Comparison with the life before the accident

3. Changes in the roles and expectations of the couple

4. Lack of communication in the couple

5. Difficulties establishing emotional relations

6. Images conveyed by society and education

Fatigue

Hemiplegia / hemiparesia,…

Limitations of movements

Changes in body sensations (insensitivity or hypersensitivity, pain)

Not wanting to show one’s body

No longer being able to satisfy one’s needs and the needs of the partner

Fear of deceiving the partner / oneself

Memory problems

Slowing of the thought

Attention problems

Judgement problems

Loss of initiative

Language problems (understanding, expression)

Fear to be exploited (memory problems, financial)

Fear of not being respected

Fear of being unable to say « no »

Difficulties accessing emotional experiences

Difficulties expressing emotional experiences

Behavioural changes :

disinhibition (hypersexuality) inhibition (hyposexuality, apathy) lack of emotional control

All these changes result in

Lack of self-esteem

Shame, feeling of guilt, helplessness

Sadness, withdrawn attitude, depression

Expressing the anger caused by the handicap through agressivity towards the others

Anxiety

Disruption with oneself and with the other

De-sexualized body in hospital environment

Body broken up, transformed vulnerable

Difficulties recognizing oneself

Changes of the self-image and the image given to others

Looking for recognition in the eyes of the other

The personal values are challenged: no longer loving oneself, no longer being able to be loved by the other

Comparison of performances, experiences, with those before the accident

Believe that the relation of the couple before the accident is anyway acquired

The history before the accident influences the current emotional and sexual life

The partner has a role of caregiver, to the detriment of his role as spouse

The body cared for is no longer « eroticized »

loss of intimity of the couple

sometimes loss of sexual identityA

mbivalent feelings between partners (guilt, shame, recognition)

Difficulties to communicate to the other one’s feelings and expectations from him

The partner becomes a caregiver

No longer being at an equal level

No longer walking at the same pace…

New expectations are not explicitely expressed

Fears

Unsaid

Incomprehension

Gap between the partners

lonely together, separations, divorces

(Kreutzer 94, Linn 94, Perlesz 2000)

Behavioural problems – agression, disinhibition – are major factors of distress (Linn 92)

Disruption of the life, depression, social withdrawal, inversion of the roles in the couple (Rosembaum et Najenson 1976)

3 to 5 times more separations and divorces (Wood, 97)

Loss of the main emotional and relational support of the spouses: disturbance of the sexuality, the communication with the partner, the social role of the couple

Refuse a new relation

To avoid suffering  To avoid an unpleasant encounter  Because of the weight of the handicap 

LONELINESS

Worship of the image and the look

Competitiveness

Performance

« The ideal image » is even more difficult to reach after the accident

Risk of misunderstandings and frustrations

Some solutions

Propose rewarding activities, of public utility, to brain-injured people

Transport Pay attention to the need of emotional

relations of the brain-injured patients Support to families and partners Training of existing services Specific

support services with an additional mission of « leasure »

Conclusions

Pay attention to the real request of the person

Do not normalize

Sex without love = ?

Love and food have the same vital importance for our health and our survival (Ko Tseu)

Encounters are still possible… One must trust life, because one is still alive

It is important to be loved, such as I am now; that someone shares, exchanges, shows me by gestures and attentions that I exist and that I matter …

Certain adults found a family and become parents after the accident…

For further information :

Christine Croisiaux - Director

« La Braise » asbl

Rue de Neerpede 165

B-1070 Bruxelles

Tél 0032 (0)2.523.04.94

Fax 0032 (0)2.523.39.52

Email : La.Braise@skynet.be

All brochures published by the Resources Center « La Braise » are downloadable (in

French) on the website :www.labraise.org