Alzheimer’s is not just about memory loss 

September 21 is celebrated as World Alzheimer’s Day. The little-understood illness is the most common type of dementia, affecting five to six percent of people above 65 years of age.

September is marked as the World Alzheimer’s Month, as part of the international awareness campaign started in 2012. India, along with the world, is greying fast and is expected to have 20 percent of the population above the age of 65 years by 2050. This increase in the elderly population definitely shows the positive effect of life-expectancy. However, it also brings in concerns of multiple age-related physical, medical, and social problems. 

One of the deadliest is dementia, an illness of the brain known for the symptoms of gradual loss in memory and other cognitive abilities (brain-related functions like attention, judgment, understanding, speech, direction sense, social behaviour), that creates an immense financial and social burden for the affected and their families alike. Alzheimer’s disease is the commonest form of dementia. Even though it is well mentioned in the digital and printed media, myriads of myths and misconceptions related to this illness create unnecessary stigma and barriers for help.

What do we need to know?

According to the Alzheimer’s Disease International, the global umbrella organisation of Alzheimer associations group, two out of three people have little or no understanding of dementia in their respective countries, needing an urgent global action. Furthermore, the studies show that more than two-thirds of the global burden of dementia lies in the low and middle-income countries, whereas less than 10 percent of research has been conducted about the same in these areas.

Here are a few salient features of this little-understood illness: 

• Dementia is a progressive long-standing disease that usually affects people older than 60 years, characterised by a gradual decline of brain-functioning and behaviour.
• Alzheimer’s disease is the most common type of dementia, affecting five to six percent of those above 65 years of age.
• Contrary to the popular myth, a decrease in memory due to ageing is not the same as suffering from Alzheimer’s disease. We all may have varying difficulties in memory and attention with age. However, Alzheimer’s involves distinct problems in the structure and function of the brain and the nerves within that lead to gradual decline in various brain activities.
• Alzheimer’s is not just about memory! Though the inability to recall names, words and day-to-day activities are common symptoms, it also involves a decline in speech, comprehension, language, direction sense, judgement, decision-making, social behaviour and social interaction.
• It can also affect the behaviour, which are technically known as Behavioural and Psychological Symptoms of Dementia (BPSD). This may involve agitation, anger, suspiciousness, reduced sleep, depression and anxiety; 60-70 percent of people with Alzheimer’s have associated BPSD.
• The illness progresses through various stages – from mild to advanced, when the person may become totally dependent on others for daily living. The time is highly variable and can range from three to fifteen years.
• Though the exact source is unknown, Alzheimer’s is caused by the deposition of abnormal proteins in certain brain regions responsible for memory. Genetic factors cause a risk but again it is not directly heritable from parent to children like Thalassemia or Hemophilia.
• There is no cure for Alzheimer’s yet. However, there’s evidence-based treatment is thee for delaying the progress of the illness as well as BPSD. Keeping the person engaged through various activities, enjoying quality time with family, nurturing his/her hobbies, staying active, exercising, ensuring adequate sleep and nutrition, and respecting their autonomy is equally important.
• The early stage of Alzheimer’s disease is known as mild cognitive impairment (MCI), wherein there may be minimal issues with memory and the person is largely independent. It may or may not worsen with time.
• Prevention is the best approach. Smoking, obesity, diabetes, hypertension, sedentary lifestyle, pollution, fast foods, stress, and untreated depression are all potential risk factors that can be modified.

End the stigma

The popular error is mistaking this illness for the ‘normal process of aging’ that leads to delay in diagnosis, progression to advanced stages, and increased stress for caregivers. The other issue that delays help-seeking is the age-old barrier of stigma, which combined with ‘ageism’ makes Alzheimer’s a prejudiced illness. People might be keen to take their seniors for the treatment of blood pressure or thyroid issues but shy away from acknowledging the ‘disorder of memory’.

Of course, it’s a difficult task to see a person vanishing gradually ‘from inside’. Hence, the caregivers of people living with Alzheimer’s need regular support and counselling themselves. It is vital to remember that while the progress of the disease can be delayed with medicines, it’s also important to retain the individual’s independence, respect their identity and attempt to provide them the best quality of life possible. 

Today, let us pledge to reduce the stigma and understand, appreciate, and help the people living with Alzheimer’s to lead better lives. There’s something to be said about cherishing ‘fading memories’.

(The author is a psychiatrist with NIMHANS, Bengaluru, India, and member of the Firstcheck.)