How does it feel to go through Alzheimer’s disease? Can’t say much about that. No one who goes through the syndrome ever comes back to tell us how it all was. All that we know about Alzheimer’s are what people living without it feel about it. While in most diseases the patients speak about what they go through in terms of history and experience, the patient with Alzheimer’s remains outside the medical evaluation loops. A tragedy of sorts.
It’s the adult children’s perception of their parent or the spouse’s difficulties with a steady partner that goes into the medical files of a person with Alzheimer’s. Therefore, the history of Alzheimer’s begins when the carer begins to suspect something has gone wrong. Perhaps by that time he/she has crossed the third stage of the disease. Generally, people tend to divide Alzheimer’s experience into seven stages and the third is crucial for varied reasons.
Though stages could easily overlap a little, we need to know how the third stage feels like. He/she is still able to look after himself/herself; doesn’t seem to have lost the ability to perform self-care, activities of daily living, could transact money and negotiate instruments. But one might suspect some slowing down of these functions. They read newspapers but forget the content soon enough, talk to people without retaining valuable information. They forget names and places just interacted with and has a problem in planning and executing tasks. All these might not be seen all at once in the same patient and except to those who are keenly observant; this stage might pass off as a minor behavioral issue of no consequence.
But this is the time carers should step in. It’s because the patient is still fine with the world around and can appreciate the efforts taken by the carer to help out. It helps to build strong and more lasting bonds of emotional support. The carer should help the patient to retrieve memories, manage transactions and perform social activities. Help in Alzheimer’s should begin while patients can still follow what is happening to them.
Nothing of promise has happened in the field of drug discovery. So, what the present time offers is a set of interventions that collectively go by the name rehabilitation. This can be viewed as planned steps by which a person can achieve an optimum level of social, psychological and physical functioning. Of particular interest are those that linked to cognitive retraining. Cochrane database is slowly picking up changes that happen in patients’ lives consequent to planned strategies. Until better models are available, this remains our best bet.
Conceptually, cognitive rehabilitation is based on two aspects of the brain-behaviour model of recovery. One is that some brain damages have a tendency to improve given the opportunity and the environment to do so. It also ropes in the luring idea of the plasticity of the brain. The other is a positive response of the brain to contextualized or compensatory approaches. Modern cognitive retraining is heavily loaded with digital technology. Right now, patients can work on cognition with assistance from the carer or the therapist and progress through increasing difficulty levels. Many technologies are immersive giving real-life experience simulation.
The earlier impairments associated with Alzheimer’s is in memory and learning. Memory encoding and consolidation, as well as declarative memory, are affected early in the disease. Patients who get sufficient time and suitable programs are able to learn and compensate for their difficulties. Some fMRI studies have shown memory-related improvement as a response to cognitive rehab techniques.
The success of such treatment would depend on the understanding shown by carers. This means that everyone should be aware of the complexities of Alzheimer’s disease progression and care. Unfortunately, we still do not have people’s literature on Alzheimer’s in the Indian languages. The English literature, on the other hand, is replete with novels, essays, and memoirs related to it. One of the recent books which gained critical acclaim is Rachel Khong’s novel, ‘Goodbye, Vitamin’. The novel evocatively portrayed the relationship between a daughter and father just as father sailed through his Alzheimer’s. Words and objects get mistaken; reality becomes blurred, giving rise t experiences and incidents that are sadly hilarious. The point to realize is that the novel captures something that medical textbooks won’t, and even if they try, can’t. Creative literature on Alzheimer’s should be part of essential reading for any medical practitioner and carer interested in the subject.
Alzheimer’s disease is a multi-layered subject.
Dr. U Nandakumar Nair (1972 Batch )
Former Prof Physical Medicine & Rehabilitation, Annamalai University.
Former Visiting Professor of PMR in SCTIMST, Trivandrum