Though, those with Alzheimer’s might forget us, we as a society must remember them

New Delhi: Alzheimer’s, a common age-oriented progressive disease that destroys memory and other important mental functions, has been adversely affecting global economic burdens for an epoch. With a rising burden of this disease in India, patient care for sufferers urgently requires to be more organized and inclusive of every stakeholder of society, especially, family members – often the stoical sufferers.

Alzheimer’s is the cleverest thief because it not only steals from you, but it steals very thing you need to remember what’s been stolen.

While society needs to be more sensitive towards such lesser-known diseases that exhibit no outward physical symptoms, families need to be given counselling through every component of patient care.

Termed as a family disease, Alzheimer’s disease (AD) exerts tremendous pressure on relatives, leaving them in a complete mental turmoil. While compassionate support may help their loved ones to accept their situation better, skilled care giving will assist them through tough days.

“Symptoms of AD include mild confusion and trouble with remembering things, initially. With time, the patient may even forget important people in his/her life and may undergo dramatic changes in personality, where its late stage includes severe loss of muscle movement including walking, talking, smiling and the patient can become completely bed ridden with absolute dependence for survival. This is a crucial time for both patient and the family hence, additional support must be extended. Doctors may help with care giving in the last stage when possibilities start thinning, and the patient can be shifted to a hospice for holistic care. While the patient might remain in a non-responsive state both mentally and physically, family counselling should go on as a part of patient care to prepare them for the loss” says Dr Ruchi Garg, Assistant Professor, IIHMR University, Jaipur.

With around 47 million people suffering from Alzheimer’s worldwide, India carries the third highest burden on the World Alzheimer’s Atlas with prevalence of more than 4.1 million people.

From the early stage to the late, the progression of the disease needs to be monitored, regulated and assessed by both family and doctors. Collaboration between relatives, doctors, nurses, and hospices can make things easier for the patient. Right after the diagnosis, the patient and the close family need time to prepare themselves for the road ahead, and, this is the point where care giving training must be extended by medical institutions. Provision of in-depth understanding of the disease, preparing the caregiver with adequate skills to assist the patient and integrating counselling for the caregiver should be designed and executed by the hospitals.

At-home caregiving can follow a curriculum of understanding the disease, emotional support, dealing with challenging behaviour from the patient, creating a safe environment for both patient and family, contingency plans and, most importantly, learning to let go. In the late stage, when the patient starts to   succumb further specially trained attendee should be allocated as care giver.

“A team of trained professionals can add value to such programmes to set the doctrine of effective caregiving at home. Hospice services are designed to support individuals at the end-of-life. Services may include support groups, visiting nurses, pain management, and home care. Hospice services are generally arranged via the treating physician and are usually not available until the physician anticipates that a person has less than six months to live. Several organizations specialize in helping families deal with the challenges involved in end-of-life care” added Dr Piyusha Mazumdar, Assistant Professor, IIHMR University, Jaipur

On 21st September, while the world celebrated Alzheimer’s day, policymakers and medical experts discussed and evaluated the prospect of better management of the growing burden of this disease, compassionate social support extended towards the family and integrating family counselling as an integral  part of patient care for Alzheimer’s care programmes, also training medical management teams through various academic courses to develop an effective support system will build a strong assistance doctrine, because gratitude is the only memory of heart and always remember their love when they can no longer remember.