This program has been developed since 2005 as a regular internship activity for Psychology students at PUC-SP. The program has the support of the Brazilian Alzheimer’s Association and takes place in a space granted by the community in São Paulo.
Each semester a new intern team is trained to work with people with dementia and their families, and interventions are offered over 12 weeks with group activities in which there is socialization, cognitive stimulation, guided walks and thematic events.
The objective of the work is to prepare the families for a better acceptance of the diagnosis with an inclusive approach that benefits from potentialities that remain and promotes integration through enjoyable activities for recovering identity and dignity.
In the absence of motivation and in the face of cognitive impairment, it is common for people with dementia to interrupt or reduce activities due to frustration and disabilities. The program restores the possibility of social interaction by offering individualized support with the necessary help to participate with maximum autonomy. The perception of accomplishment in completing tasks, even with assistance, raises the sense of accomplishment, which is fundamental to satisfaction and therefore contributes to the mentioned sense of identity.
Results show an improvement in the mood and functionality with reports from family members stating that people with dementia become more alert and socially active after taking part in the groups.
The proposal involves feedback at the end of each semester with recommendations for activities useful for each program participant with a written report.
Fernanda Gouveia has been a psychologist and volunteer at the Brazilian Alzheimer’s Association (Abraz) since 2005, building up experience and connecting with a population living with a complex diagnosis and the lack of resources and strategies to deal with daily challenges. This is why she created a series of programs and materials aimed at empowering families, reducing the burden and strengthening non-pharmacological resources for coping with dementias. From 2011 to 2014 she chaired Abraz, a period during which informative materials and training for support group coordination were created.
The GRUPO INTERATIVO program works at no cost through mutually beneficial partnerships. Abraz refers patients from and students from the psychology course at PUC-SP – under her supervision – follow the project free of charge.
Every semester a new team of interns (7 to 9) receives a 5 week training course on how to work with people with dementia, providing them with training on symptoms, treatments, emotional and social consequences as well as cognitive stimulation and group facilitation strategies.
In the following 12 weeks the intervention program takes place, which involves the following steps:
1 – Screening of new cases:
- A) In-depth interview with family caregiver to register previous story and diagnosis, initial and current symptoms, treatments used, perceived changes, difficulties experienced, strategies for symptom management and emotional repercussions.
- B) Cognitive screening tests and social interaction to verify the main abilities versus difficulties. With this it is possible to say if it will be possible to participate in the groups according to distribution criteria.
2 – DISTRIBUTION of participants into 3 groups (number of rooms) including 1 group for family caregivers and 2 groups for people with dementia distributed between mild to moderate and moderate to severe stages.
3 – INTERVENTION with family carers. The group of caregivers is always heterogeneous with participants from different parentage, age and time in the role of caregiver. It is not necessary for the diagnosed person to participate in the groups for the inclusion of family members, since some may be with relatives in an advanced stage, therefore not meeting the criteria.
Frequent themes for interventions involve disclosure of diagnosis, sociability, autonomy and decision-making, caregiver self-care, and symptom management.
4 – GROUP INTERVENTION FOR PEOPLE WITH DEMENTIA. Distributed according to stage and symptoms, people with Alzheimer’s and other dementias are offered spaces for interaction with activities that are achievable, but involve challenges and support to ensure achievement and satisfaction. Therefore, the program involves the development of actions in a tailored and creative approach by considering previous habits and biography.
Some precautions are fundamental to guarantee the well-being of participants:
- A) often patients are unaware of their diagnosis, so the objective revealed may be stimulation to improve brain functioning;
- B) all people with dementia and trainees wear a badge to facilitate communication based on a visual clue without memory input;
- C) the activities developed need to be pleasurable to ensure their safety and sustainability;
- D) individualized record of emotional and cognitive responses is carried out for patient-centered follow-up that will allow family guidance;
- E) socialization moments are always encouraged and prioritized.
5 – COMMON ACTIVITIES. Throughout each semester, at least two meetings are held involving patients and carers. Activities such as outings to museums and squares have already been carried out. To exemplify the type of action: we have already carried out a competition in a shopping mall (safe environment and with accessibility) with the establishment of teams and clues involving the collection of letters which will form a word to be taken to an afternoon coffee. It involves challenges in which they need to interact with external people and team members, take pictures, record information in a dynamic and fun way. The actions are monitored by students from the psychology course and the family members receive guidance that encourages autonomy. At the end of each semester a thematic party is held, which may involve the Festa Junina, Christmas party, World Cup or whatever theme is selected.
The benefits of the programe may involve:
– Family members with greater acceptance and flexibility for necessary adaptations;
– Family members with a social support network to support changes through the exchange of experiences and group identification;
– Increased repertoire of cognitive and social stimulation activities;
– Training of professionals capable of identifying symptoms, favouring early diagnosis and adequately guiding possible non-pharmacological treatments in Dementia;
– Breaking the stereotypes that there is nothing to do in cases of dementia.
Fernanda Gouveia Paulino – São Paulo, Brazil – PhD in Clinical Psychology, Faculty at the Pontifícia Universidade Católica de São Paulo (PUC-SP) – fegouveia(at)pucsp(dot)br
Project coordinator’s details
Curriculum Lattes platform of the project coordinator