With the exponentially growing elderly population worldwide, the number of people with dementia is also rising, warranting the need for more trained caregivers to support them. With changing demographics, one wonders if schools will one day get converted into elderly day-care centres. India has approximately 18 per cent of the world’s population. It is also seeing a rising greying population, and hence, there will be more people with dementia to care for in the years to come. It is estimated from a recent research paper from a Longitudinal Ageing study that 7.4 per cent of older adults in India have dementia.

This means there are an estimated 88 lakh people with dementia in India. Alzheimer’s disease is the most common type of dementia, which constitutes up to 70- 75 per cent of all types of dementia. This article marks the occasion of World Alzheimers’ Day, with the theme, “Know Dementia, Know Alzheimer’s”. Family members who are taking care of their elderly with dementia do understand the fact that understanding the illness would help in better caregiving, and reduce stress on caregivers. As per the World Alzheimer’s Report of 2019, 62 per cent of healthcare workers considered dementia as a part of normal aging and did not think it was an illness.

The report found many family members considered dementia as a social stigma and tried to hide it from others. The majority of the general public reported that nothing could be done once dementia is diagnosed. These attitudes pose barriers to early identification, treatment, and management. The public’s knowledge, attitudes, and practices about this illness need to change, and this can be achieved by educating people about the illness. Alzheimer’s disease is a disease of the brain occurring due to the accumulation of ‘corrupted or badly programmed’ proteins inside and in between the nerve cells.

Since these are toxic in nature, they break cell connections as well as cause the death of nerve cells, without replacement. This means the stored information in the group of cells is lost, and as a result, the relevant ability to function suffers. Thus, there is a gradual decline in the function related to that region of the brain. Generally, when the inner part of the so-called ‘temporal lobe’ that is closer to the ears degenerates, short-term memory and new learning are affected. Since the process starts early in this area, forgetfulness about recent events with intact long-term memory is usually the first sign of Alzheimer’s disease.

Later, there is a decline in concentration, ability to solve problems, calculations, and ability to sequence events needed in routine activities and to look after oneself. Unfortunately, there is a gradual worsening over a few years and a loss of autonomy as they become dependent for all functions. There are, in addition, so-called behavioural problems that increase the stress of caregiving family members. This will cause problems if the main caregiver is a spouse of a similar age who also may have ageing-related medical ailments. Treatment depends on the stage of the illness and mainly involves caring, which becomes a full-time job for some caregivers, not much different from managing a baby.

Educating the public and training healthcare staff, including screening in special cases, is needed so that illness can be detected early and care plans can be prepared. This helps to plan and reduce the stress on families. When the disease starts progressing, the behaviours secondary to dementia are to be managed. Often, creating a routine schedule for the persons, and group activities, if feasible, will help manage the behaviours without the need for medications. They need to engage in cognitively stimulating activities. Very few cities have agencies that provide trained formal caregivers to manage them, and if this suits the patients, it takes away a lot of stress from family members. The advanced stages involve managing basic needs and treatment is entirely aimed at giving them comfort. Listening to music and engaging in some activities have been reported to help improve behaviour. Everyone must learn and understand the factors contributing to and worsening the condition. Talk to doctors about the course of the illness.

Don’t miss prescribed medications and other health advice. While managing persons with dementia, one must respect their personal space and dignity. Focus on the current functioning and help them stay active. Support them for their memory loss by repeatedly reminding them of names and relations without losing patience. It is best for family members to take turns in caregiving roles. Recent advances include attempting to detect the illness by special early brain scans and approval of disease process-modifying medications. Three such drugs have received approval in the USA, and one is also available in Japan. They work by removing the accumulated bad proteins by making them more soluble or by other similar means.

Currently, no optimistic reports have been heard from experts and clinicians about these medications. From our practical understanding, as of now in India, there is no cure for Alzheimer’s disease. Therefore, we can focus on risk reduction strategies. Recently, two more risk factors were added to the previous list of 12 risk factors throughout life, making it 14, of which we can work on the modifiable ones to delay or prevent Alzheimer’s disease. The risk factors for Alzheimer’s disease are High Blood Pressure, Diabetes, high cholesterol levels, smoking, excessive alcohol use, obesity, and physical inactivity. Since these are also risk factors for heart disease, the public knows how to manage them. The same health advisory for maintaining a healthy heart applies to the prevention or delay of Alzheimer’s disease.

This includes regular, frequent physical health check-ups for high blood pressure, diabetes, and high cholesterol. If one has developed any of these, the most important thing is regular monitoring to ensure they are under control and complications are prevented. Adopting a healthy lifestyle, such as regular exercise, yoga, or meditation, ensures regular physical activity. Along with these, avoiding smoking and alcohol use are also useful. It is never too late to quit smoking, and the body starts to recover after quitting smoking. Hearing loss is listed as one of the major contributing risk factors.

Also, sensory impairment in visual modality has been listed as a risk factor. This suggests that there is a need for older people to undergo regular vision and hearing tests. Depression and loneliness also increase the chances of Alzheimer’s illness. Hence, identifying and treating depression becomes very important. Resistance to seeking help for depression will, therefore, mean the risk is increasing. If depression is not fully improved, there is a need to expedite its treatment to protect the brain. Loneliness is another social problem recognised by experts in many countries. Loneliness must be overcome. Older people must get involved in regular activities after retirement to keep themselves occupied. They must socialize well.

Social media using smartphones can also be of help if used judiciously. They must try to attend functions and ceremonies to meet family, relatives, and friends regularly. Early morning or evening walks in parks and socialising with contemporaries helps to maintain good health. A healthy diet and maintaining sleep hygiene, though not listed as important factors, can also help. Many family members complain that their elderly parents do not wish to see doctors regularly or take medications appropriately. This can also worsen the situation and affect relationships as it continues to cause worries in adult children or spouses.

One must have a regular routine and be occupied with favourite interests, including watching sports and newspapers, engaging in debate, and meeting friends or contemporaries. The scheduled activities always keep the emotions and thoughts of the mind in check. Getting older is inevitable, especially when the current trend is increased longevity, and therefore, many are at risk of Alzheimer’s disease. Taking responsibility by adopting a healthy lifestyle, thereby working on the risk factors, one can prevent or delay the illness, which improves the quality of life of self and caring for family members.

(The writers of this article are psychiatrists at NIMHANS and Bowring & Lady Curzon Hospital, Bengaluru, respectively.)