“The Indian Caregiver’s Corner” :
This section is made to explain theoretically the different aspects of Alzheimer’s Disease, the patients and caregivers have to face worldwide… like the impairment process, the different disorders: memory, language, organization… changes in personality and behavior…. But also, the impact of the pharmacological and non-pharmacological interventions like socialization, meditation, physical exercise, the caregiver’s role and difficulties encountered in India.
Readers are invited to enrich this section to make it an experience-based one, a resourceful section for other caregivers to find there helpful tips/ways to cope with the symptoms, the daily care activities and to face specific situations in their local setting, at home, outside, with family, doctors….
The role of socialization in dementia care.
Socialization mobilizes the remaining cognitive abilities through interactions/relationships-building supported by the pleasure it gives to interact with someone non-judgmental as if, for a while, everything came back to “normal”. This interactive situation makes/encourages the person suffering from AD to use his/her speech abilities, recollect and share his/her memories, handle a conversation, follow the thread as much as possible, remain active within the interaction, behave properly, caring for his/her personal appearance, still feel as a subject/human being adjusted to a situation….all that in a very friendly and supportive adapted environment.
These few things may seem to us, very common actions to undertake but do require in fact, the involvement of specifics intellectual abilities/functions themselves related to different regions of the brain. Then, a supposed to be very “easy” task to perform requires in real, much more (but sadly often unsuccessful) efforts from those affected by this neuro-degenerative disease exhausting their energy and their caregivers.
Socialization provides an interactive and stress-free environment for the patient and his/her caregiver without any objective of performing a task or exercise but naturally activating the intellectual/cognitive abilities/functions through a relational framework.
So socialization should be seen as a social stimulation activity, which barely need to be designed to make the person uses his/her remaining abilities. Actually, the aim of this social stimulation experience is mainly about bringing social support and emotional comfort to the patient through the re-use of these abilities. This re-building of a social bond lost sometimes a long time ago, is often appreciated by the patients. Of course, the previous personality of the patient suffering from AD does matter. If he/she nurtured the tendency of being alone or away from the crowd, this personality trait may increase or in some cases, totally turn into the opposite. In addition, anxiety, non-recognition of faces and places and/or a sense of shame may appear and increase social exclusion.
However, studies indicate that good socialization experiences decrease over time stress, depression, anxiety and other behavioral disorders from the patient. On the contrary, repeated bad socialization experiences may be harmful for people with dementia. Indeed, stressful, they disrupt the patients and raise the anxiety and agitation. As to the absence of social stimulation, it brings over time a feeling of loneliness and abandon with a negative impact on their already declining condition.
In western countries, adapted/designed and repeated social stimulation activities appeared to be beneficial through the experience of Dementia Day Care Centers for patients undergoing early to moderate stages of the disease. Indeed, though studies showed that it doesn’t reverse at all the disease/cognitive decline, researchers found that the daily participation to a DCC had a positive impact on the quality of life of the patients through their mood and behavioral improvement.
According to some researchers, these designed activities would also allow the cognitive/brain functions to remain actives through their repeated use. Such designed stimulations would then allow the brain to draw in its “cognitive reserve” and may even activate, the “cerebral plasticity”. Anyway, for a short period of time, it breaks the feeling of being inadapted, the feeling of loneliness and agitation raised by situations of high tension and misunderstanding settled over time within families.
However, if the separation with the primary caregiver is not possible even for a short time and/or the access to a DCC remain impossible, socialization appeared to be the easiest intervention to be implemented by carers/families in their daily life, at home or outside. Indeed, family/caregivers may be trained to valorize/value every social interaction through communication skills, noticing and building more pleasant activities fitting the patient habits, personality and remaining abilities. When applied properly and combined with the proper medical treatments, anxiety and agitation may decrease and the patient may feel more comfortable within his own environment.
Habitually, the Indian cultural setting would provide older persons with numerous social contacts through the joint family system and/or strong community bonds. But today, the Indian society is changing. If taking care of an elderly person suffering from a neurodegenerative disease has always been demanding; today in the Indian emerging economy, family caregivers are often overwhelmed. This is due to the usually low level of awareness regarding Dementia, the time and energy required today in busy schedules for its care management, and, in addition, the absence of support and understanding from one’s own environment. So, if western countries have yet undergone numerous studies to follow the evolution of AD and build accordingly non-pharmacological interventions and structures for the specific needs of these patients; including AD in their public health policies; India is nowadays undergoing a transition. Indeed, dementia care management is here only at the beginning.
As the India Dementia Report 2010 edited by the ARDSI has well mentioned, there are only a few dementia day care centers throughout all the territory and even less specialized respite centers. No doubt that in the future, to support/help the Indian families to cope with their daily caregiving activities and meet the needs of around 3.7millions patients diagnosed with AD; the professional carers involved in the geriatric and gerontology field there, would have to get together to face the increasingly high expectations and so, for the implementation of more of such specialized structures.
Ms Hendi LINGIAH
Clinical Psychologist in gerontology.
15/08/2011.
INTERVIEWS WITH CAREGIVERS, VOLUNTEERS, AND EXPERTS
