CHENNAI: “I was 19 when my dad was diagnosed with Alzheimer’s,” recalls Arjun. In what he calls as “the darkest phase” of his life, he saw his father, a highly spirited, joyous, independent man turn completely helpless and vulnerable. “It was the most heartbreaking moment in my life,” he says. “He’d forget our names, way to our home, dates and days and sometimes even his own name and we had to look after him every single day of his life. There were times when he used to feel extremely guilty about this and it angered him at other times,” he remembers.
Arjun’s story talks about a side to Alzheimer’s which is usually neglected-the impact the condition has on family members and friends. And as experts point out, the family becomes “the second victims of Alzheimer’s” or “invisible patients”.
Alzheimer’s is a progressive disorder wherein the brain cells degenerate and die. What begins as a mild memory loss will slowly progress into severe memory impairment, delusions, inability to perform day to day activities and loss of cognitive abilities. There is currently no cure for the disease, except for supportive medicines which slows the degeneration process.
The slowly progressive nature of the disease takes an emotional, physical and mental toll on both the patient as well the family, says Dr Senthil Nathan, Consultant, Neurology, Fortis Malar Hospital. He points out that in most cases Alzheimer’s patients need a 24/7 caregiver, who needs to monitor or perform even their basic activities. “The patients need assistance with everything including bathing, eating and grooming. As the condition progresses, it might also cause bowel incontinence. It is really important to have patience and be mentally prepared to face the challenges,”, he asserts.
“As the condition progresses, there will be marked behavioural changes in the patient such as personality change, mood swings, erratic sleep patterns and restlessness. These are some of the early signs of the onset of severe dementia. It completely changes the person. We call this ‘social death’ .”, says Dr Yamini Kannappan, Consultant Psychiatrist, Kauvery Hospital, Chennai.
With the concept of geriatric care still in its infancy stage in India, she says, the entire responsibility of caring for an Alzheimer’s patient falls on the immediate family members. Most families also cannot afford a private caretaker or nurse due to financial constraints and with working caregivers, this becomes a huge problem, she adds. “There are many cases where the caregiver feels guilty and that his/her efforts are insufficient. In most cases, there is no improvement which leaves them frustrated. The patient might also develop a habit of misplacing their belongings and accuse their own family member of theft. I’ve seen caretakers get angry about these accusations. But it is important to understand that it is a part of the disorder. Caregivers should be provided with a sound knowledge of the condition”, she explains the ‘Caretaker burden’.
Dr Yamini emphasises that it is essential that caregivers take time off for themselves . “The caregivers cannot afford to burn out. Adequate breaks and sharing of responsibilities, including financial care is a must”, she adds.
Doctors also say that adopting a ‘person-centric’ approach for care is the best option for both the caregiver as well as the patient.