August 27, 2024                                                                                              

Dementia is a progressive, incurable and life-limiting neurological disease. There are many types of dementia but the four most prevalent are Alzheimer’s Dementia, Lewy Body Dementia, Vascular Dementia and Fronto Temporal dementia. When it comes to dementia, no two people are alike and the manifestation of symptoms vary from person to person.

According to the multi-researcher nationwide study headed by Jinkook Lee, Erik Meijer and others (2023) published in Alzheimer’s Dementia: The Journal of Alzheimer’s Association (Vol.19, Issue 7), estimated dementia prevalence for adults over 60 years in India is 7.4% which means about 8.8 million Indians are living with dementia! The study also found that dementia is more prevalent among women and in rural areas than urban areas.

Named after Dr. Alois Alzheimer, Alzheimer’s (pronounced as Al-zai-merz) Dementia is the most common which constitutes 60-70% of all dementia cases. According to disease progression and symptom picture, AD is divided into 3 stages- as Mild, Moderate and Severe. AD usually damages the connections among neurons in parts of the brain responsible for memory including entorhinal cortex and the hippocampus. Toxic changes in the brain are characterized by abnormal build ups of proteins that from amyloid plaques and tau tangles. Later, the damage spreads to cerebral cortex which controls language, reasoning and social behaviour. Eventually, the other areas of the brain and surrounding neurons are affected thereby rendering the person totally dependent on others for care.

Family is often at a loss when caring for a loved one with dementia as each day poses a new challenge and there is no way one can predict the behaviour. It is important to understand the stages of dementia in order to know how to care for the person. This write up is an attempt to shed some light on the various challenges of caring for someone with dementia and tips for addressing them.

In the first stage, people living with dementia usually have immediate memory loss which is characterized by asking or saying the same thing repeatedly, not being able to remember if they have eaten, where they kept their glasses or keys, etc. They may lose their ability to make a grocery list, handle money when they go shopping or travel by bus or auto. They may lose their train of thought when they write letters or may just draw a blank while speaking. Difficulty in expressing what they want and inability to find the right words is also common during the early stage of AD.

In the second stage, in addition to immediate memory, short-term memory may fade. Planning, organizing, decision making, and thinking deficits become more profound requiring assistance from family in carrying out even simple, everyday tasks. Some may be confused about getting dressed, taking a shower or even handling cutlery while eating. Loss of control over bladder and bowel movements is also seen in the second stage, leading to embarrassing accidents. Additionally, the ability to recognize family and friends, to know the time and date adds to the confusion.

Communication becomes a challenge in this stage and they may feel frustrated when they are not understood by family members. They have short attention spans and are easily distracted which affects their ability to follow instructions. They may forget the key ingredients while cooking or performing other chores which they could manage effortlessly prior to the onset of dementia. Some may engage in repetitive movements or gestures which are often meaningless like pacing, rocking and so on.

Just because they do not remember where they placed their belongings, it is common for people with dementia to accuse family members and caregivers of stealing or hiding their valuables. Any confrontation may lead to aggressive outbursts, verbal abuse, hitting and kicking. Additionally, some may have trouble sleeping at night and may engage in pacing and wandering. As the confusion, accusations, irritability and other behavioural issues usually worsen in the evening hours, it has been called ‘sundowning.’ Bathing becomes an ordeal as some persons living with dementia may not like to take a bath. Keeping a regular time for bathing sometimes helps. Picking a time when the person is not agitated or irritable is the solution.

It is important to speak in clear, short sentences. Be specific with instructions. Keep the communication two-way so that they feel they are also being heard. Be careful about your tone of voice and volume which could be perceived as intimidating. Background noise level needs to be reduced so that they can pay attention to what you’re saying. For example, it is very confusing when you talk to a person with dementia in a room where the TV is on and a dog is barking in the background. They are not able to filter the sounds and pay attention to what is more important. Persons with AD sometimes become hypersensitive to sound and therefore, it helps to keep the volume down while talking to them. Try to maintain eye contact, offer to hold their hand and then communicate in a gentle manner to elicit a better response from them.

Rummaging is a common symptom in the moderate stage of dementia where the person goes through cabinets, closets, refrigerator and so on looking for things, hiding things in these places which can be annoying and sometimes dangerous. For example, hiding the TV remote in the freezer for safe keeping can destroy the remote. There is no use getting angry or reprimanding but the family caregivers have to understand that this just part of the disease and is not done with any bad intention. The reason for rummaging may be to look for something they have kept but have forgotten or simply because they are bored and do not know what to do. Raiding the refrigerator could be a sign of hunger. Food waste in garbage bins also should be kept out of their reach as they sometimes lose the ability to understand what is edible and what is not.

Do not keep any stale food in the refrigerator as the person with dementia is sometimes unable to smell or taste the food and eating spoilt food can be a health hazard.

It is necessary to keep all the legal documents, cheque books, money, jewelry or other valuables locked away as the person may not understand the value of these things. This applies to prescription medications, toxic household cleaning supplies, or pesticides which should be kept out of their reach.

Find out where the person usually hides things and you can look for them when the person is not around. It is not uncommon for dementia sufferers to flush things in the toilet or throw them in the thrash.

Providing them safe places to rummage- a cupboard, hand bag, a desk will help keep them engaged. Keep papers, clothes, fake currency notes, loose change, artificial jewelry to give them a sense of entitlement.

The final stage of AD is often called the advanced stage where the person requires help for almost all activities of daily living- eating, bathing, grooming, walking, sitting down, getting up from bed, etc. Dementia sometimes affects a person’s sense of taste and smell which is also one of the reasons for refusing food. In the advanced stages, the activity level comes down drastically and they may become bed bound requiring care and attention 24 x 7.

Light physiotherapy or massage therapy helps in stimulating the muscles and bones and keeping them active as long as possible.

Since their ability to chew and swallow is impacted in the final stage of dementia, it is better to switch to semi solid food by blending the food. Oats, Millets, Semolina, rice gruel, soups, protein drinks are better alternatives to solid food.

Feed them in an upright position so that they can swallow easily. Remember not to feed them when they are sleepy or groggy. When the ability to swallow is grossly compromised, it is advisable to insert a naso-gastric tube to help with feeding.

Diapers have to be changed frequently to prevent urinary tract infections and the development of pressure sores. Frequent position changes, lubrication of skin, use of air or water beds will help in the prevention of pressure sores as well. Catheterization is an option when the person has urinary incontinence. However, changing the catheter regularly, daily catheter care is required to prevent urinary tract infections.