Samvaad is a project of Samarpan Awareness Foundation (SAF) which stimulates a dialogue between people in similar life situations.
On occasion of World Alzheimer’s Day, SAF launches a support group for Care Givers of Alzheimer’s disease and other dementia patients.
Dementia is a chronic disease that as yet does not have any curative treatment. It has three main stages:
1) Preclinical stage – disease starts inside the brain, but there are no obvious symptoms noticed by patient or relatives. In day to day life everything appears normal. At this stage it can be identified only by detailed tests for memory or special advanced investigations.
2) Clinical stage- this is the stage when symptoms / problems start getting noticed, like forgetting names or things, losing the way and getting lost, not recognising people, some irrational thinking, changes in personality, missing words while talking and so on. These changes are different for each person. This is a progressive stage. In this stage diagnosis starts becoming obvious and it can be confirmed by tests. Some blood tests are essential because some dementias are reversible. It is extremely important to recognize these reversible memory problems. Vitamin B12 deficiency is the most common example.
3) Terminal stage – gradually the dementia increases and the patient starts needing help for day to day life activities. He/she needs to be looked after with more and more attention. This is where the patients start losing the functions related to their identity. And gradually the patient ends up in a vegetative state.
Once the diagnosis of chronic dementia is done, the treatment starts. However, tablets are insufficient for managing dementias. Along with medicines many lifestyle changes have to be made. As the patient is going through this progressive and chronic disease, the burden of caring falls on the caregivers. The caregivers need separate attention. Very often the caregivers are stressed, anxious and depressed. Thus, they become additional responsibility of the healthcare system but paradoxically they are currently missed by the radars of the illness industry.
Especially in the terminal state of dementia, the real burden is on the care giver. Thus, in dementia there are mostly more than one patient per family. In addition to the medical aspects the social stigmas of dementia are tremendous. These add to the psychosocial burden of the caregivers.
The complex stress of the caregivers needs to be acknowledged and addressed. This work is beyond the scope of prescriptions. Hence SAF has taken this initiative of Smruti Samvaad where the caregivers of the patients can come together and solve each other’s problems through mutual understandings and empathy. And the first meeting will take place on 22nd of September 2018 at Shanti Niketan Clinic.
