Alzheimer’s disease is a progressive disorder that causes brain cells to waste away (degenerate) and die. Alzheimer’s disease causes a continuous decline in thinking, behavioral and social skills. This disrupts a person’s ability to function independently. Family caregivers would have to understand and respond to these changes in the functional ability of the person with dementia. This is essential for managing Alzheimer’s as it progresses. There are no uniform timelines for these changes.
Ms. Gurdip Kaur, a 91-year-old has been living with Alzheimer’s disease for about 15 years now. Ms. Kaur’s condition progressed slowly over the years. A loving family that comprises of her sons, daughter, their spouses and children care for Ms. Kaur. The primary family caregivers, Mr. Sandhu the son, and Ms. Reena the daughter speak about how they have made decisions during the course of their caregiving journey.
While the earliest leg of the journey spanning over a period of more than 3 years went with slow forgetting, not much of a perceptible change. Then came the phase where the family felt that they need support so as not to leave her unattended during the day. So over the next 3-4 years, the family hired daycare support mainly from unorganized providers. In the following phase, they felt the need for someone to be by her side even at night. Now she doesn’t recognize most of her family members most times. In this phase, it is important to have a caregiver who is solely focused on the person with dementia and whom the family trusts.
Role of a Professional Caregiver
Family members of a person with dementia find it very hard to leave the person alone at home. Besides the physical safety of the person, it is also about assurance about the caregiver’s honesty and diligence with understanding and addressing the needs of the person with dementia. This requires skill and intention on the side of the caregiver. Families and supervising teams guide the caregiver to understand and suitably respond to the person’s needs. People with dementia may not have adequate or appropriate words to articulate their problems. But they still “feel” reiterates Mr. Sandhu. They sense when a caregiver is sincere and genuinely caring. Quality of life of the person and the family depends on this sense of comfort that comes from a caregiver who can be trusted.
Ms. Kaur’s caregiver Sonam Negi is a youngster who is pursuing graduation in long-distance mode. She migrated from Uttrakhand to become a caregiver. She made that journey from Uttarakhand confidently, based on guidance from a friend who knew people who worked as caregivers with Life Circle. Sonam may ultimately move on to another job, once she has a graduation. She says this job is a good option for those who want to pursue higher education while earning. It gives her the toehold. Caregiving as an earning option for young people is not a new idea. Sweden, for instance, has had a successful home health and social care program engaging student “volunteers”. They are paid to help seniors while they study and when they have time off their studies.
Sonam Negi (Caregiver)