Alzheimer’s – The Dreaded Disease

It’s estimated that 44 million people in the world have Alzheimer’s disease

• Alzheimer’s disease is the dreaded progressive brain disorder that slowly destroys brain cells causing problems with memory, thinking, and behavior that can affect work, relationships, hobbies, and social life

Tasneem Hossain | Bangladesh

How would you feel if one day you get up from sleep and your spouse, who has been married with you for 40 years, can’t recognize you? Or, one day you knock at the door and your mother opens the door and asks who you are looking for?

First you might take it as a joke, and then maybe you’ll get confused. Eventually, you might get irritated. Sadly, it might happen to some of our beloved ones. Terrifying thought – right?

Regrettably, for some people it might come true if they suffer from Alzheimer’s.

It’s estimated that 44 million people in the world have Alzheimer’s disease. Today, it’s the seventh leading cause of death around the globe and  the fifth leading cause of death for those aged 65 years and older. Additionally, this condition causes more disability and poor health than any other disease. When someone is diagnosed with Alzheimer’s, their life expectancy is between 4 to 8 years.

Alzheimer’s disease is the dreaded progressive brain disorder that slowly destroys brain cells causing problems with memory, thinking, and behavior that can affect work, relationships, hobbies, and social life; eventually, affecting one’s ability to carry out simple daily tasks.

Scientists haven’t been able to identify what causes Alzheimer’s. Till now, the causes identified are possibly a combination of age-related changes in the brain, along with genetic, environmental, and lifestyle factors.  Also, Alzheimer’s affects individuals differently.

Unfortunately, science hasn’t found a cure, or a way to prevent it yet.

Once I heard a story. A man used to visit a patient every day and stayed from morning till night for two years. The nurse in that hospital was very curious.

One day, she asked, ‘Sir, I have observed that you have been visiting this lady every day for the last two years. May I know why?’

‘She’s my wife.’

‘But she doesn’t remember you at all.’

‘She may not remember, but I do’

Isn’t this how relationships should be?

Being family members, isn’t it on us to take care of family members when they suffer from Alzheimer or any other disease? Of course, one cannot be there all the time. But the person, who loved you and contributed so much, surely deserves to be taken care of.

Understanding what to expect with Alzheimer’s can help you to understand your loved one’s experience and plan ahead.

The disease develops, normally, in three stages.

In the first stage, a person has mild signs and symptoms and may still be able to perform professional and social activities. Though they may have difficulty with some tasks that involve brain function.

The second has moderate symptoms showing significant memory loss, confusion, and physical limitations resulting in inability to recognize family members, follow instructions and carry out daily tasks.

In its severest stage, the person needs help with most tasks and may suffer involuntary urination, difficulty in chewing or swallowing; and become oblivious of the environment.

It’s always better to be prepared beforehand to help loved ones in their times of crisis. At the same time we must understand that the demands of caregiving can take a toll on the caregiver.  So, as a caregiver, you also need to take care of your physical and mental health.

Today we will focus on how we, as caregivers, can help our loved ones during their times of distress.

As Alzheimer’s progresses, decision-making becomes harder. So it’s essential to address various administrative formalities when a person is diagnosed with early stages of the disease e.g. discuss their wishes for the type of medical treatments they want; get authorization to discuss their medical history with doctors; make medical decisions; and to make financial decisions.

Alzheimer’s can significantly impact a person’s ability to communicate. They may find difficulty in finding the right words, to a total inability to communicate; become unmindful in between conversations and feel depressed if they cannot find the words to express themselves. Caregivers and loved ones need patience and understanding to communicate successfully.

Plan conversation topics beforehand, considering their interests, mood and body language; use photos to encourage sharing of wonderful memories.

Some communication techniques to help improve communication:

• Ensure that the person is comfortable before starting a conversation.
• Remove distractions by turning off the radio, television. Pay full attention and stop other activities.
• Keep open and relaxed body language. Smile when speaking or listening.
• Encourage them to establish eye contact. Nod to show that you are listening
• Call them by their preferred name rather than their title. Talk with them as adults .
• Speak with a calm, friendly voice. Keep conversations short, clear and simple.
• Give time to process information. If necessary, repeat instructions.
• One question at a time. Don’t ask open-ended questions. Give options like yes or no.
• If offered between choices, keep the choices simple e.g. ‘What would you like to have -vegetables or soup?’
• Don’t switch topics frequently.
• Do not interrupt or complete their sentences.
• Alzheimer’s affects mood and behavior. Don’t take their actions personally. If they are upset, let them express their feelings. Listen with empathy.
• If some undue conversation occurs, don’t argue or become agitated. Change topic of conversation; speak in a soft comforting manner; avoid speaking in a raised voice or a sharp tone. Leave the room on some pretext, if necessary.
• Try to use distractions if telling the truth will upset the person. For example, to answer the question, ‘Where is my father?’ it’s better to say, ‘He’s not here right now.’ instead of ‘He died 15 years ago.’
• Use specific words. For example, instead of ‘Sit there,’ say: ‘Could you please sit on the bed?’
• Avoid dominating statements, like ‘You need to eat now.’
• Avoid correcting them with statements, like ‘That’s not what he said’
• Avoid questions like ‘Do you remember?’

Following these simple techniques will help better communication with your loved ones.

Taking care of the dreaded Alzheimer’s disease

Caring for someone with Alzheimer’s disease can be rewarding. But it can also be stressful and time-consuming. Since, it’s a progressive illness, responsibilities of caregivers increase with time.  Planning ahead can help. Before making a plan, consider the person’s likes, dislikes, strengths, abilities, interests; regular schedule and times of day when the person functions best.

The following tips might help:

• Set a daily routine to perform some easy tasks themselves, if possible, like bathing, brushing, combing and doing simple household chores such as folding laundry -allow extra time.
• They might not need a complete bath every day. A sponge bath may do. When they do take a bath, always check the temperature of the water; use a bath chair with handrails and place rubber mats to avoid falls; keep the bathroom well-lit.
• Make sure all necessary items like shampoo, shower gel, towels, clothes etc. are ready before bringing your loved ones in the bathroom. Never leave them alone. If they need help in bathing, do it slowly and tell what you are doing step by step. Allow her/him to assist in the process as much as possible.
• If your loved one is too heavy, you might need special equipment. Take doctor’s advice.
• Brush their teeth daily. If they wear dentures, clean those every day and ensure to fix those properly; check gum health regularly.
• If they don’t open their mouth, brush the outsides of teeth and ask their dentist’s advice for dental care.
• If they brush their own teeth, help by putting the toothpaste on the brush.
• Help and encourage them to shave or put on makeup, if they usually do.
• Keep fingernails and toenails short. Feeling good may boost their mood.
• Lay the day’s clothes in the order of putting them on.
• If necessary, discreetly get them washable incontinence pants or pads.
• Maintain the same time for waking up, eating and going to bed. Ensure rest time in between activities.
• Serve meals in a consistent, familiar place and give enough time to eat. Serve small portions throughout the day. As the disease progresses, there’s increased risk of choking and aspiration so select foods that are easy to chew and swallow.
• If the person has trouble using utensils, use a bowl instead of a plate; utensils with easy to hold handles. Serving finger foods, such as small sandwiches, fish fingers, chicken nuggets, cheese; and fruit cut into small pieces can be helpful.
• It’s vital to eat a nutritious, balanced diet and stay hydrated to slow down cognitive changes. For maximum benefits include leafy green vegetables, fruits and vegetables of different colors, whole grains, fish and poultry.
• Red meat, sugar and fried foods should be avoided.
• Use straws in glasses with lids to make drinking easier.
• Schedule bathroom visits.
• If your loved one has difficulty in bowel or bladder control, seek doctor’s advice. Medication might help.
• Regular physical and brain activities can slow cognitive changes and improves mood. Encourage to do some simple physical and brain exercises. Walking, reading and playing mind games like puzzles or card games may help. If the person seems bored, distracted or irritable, you may introduce another activity or give time to rest.
• Consider including activities they like e.g. dancing or listening to music; going to a restaurant, museum, park, or movie and visiting friends and family.
• Ensure regular and correct medication.

For safety your loved one may be coaxed into wearing an identity bracelet with their name, address, and emergency contact details. Alternatively, a tracker watch can be used.

Normally the person with Alzheimer’s may become restless, irritable, and confused. This is referred to as ‘sundowning’. It worsens during late afternoon and early evening hours making them wander around during the day or night. This can be challenging for caregivers. Try to maintain a bedtime routine. Activity during the day can be increased and daytime napping and caffeine before bed can be limited.

As a caregiver or family member to a person with Alzheimer’s, you can take steps to make the person comfortable and safe by adding safety features in the home.

Try these tips:

• Buy loose-fitting, comfortable, easy-to-wear clothing.
• Ensure comfortable shoes.
• Use a strong shower chair.
• Place ‘hot’ and ‘cold’ stickers near taps.
• Place handrails and mats in the shower.
• Install raised toilet seats to make it easier for them to use.
• If they have trouble getting to the bathroom, especially at night, a bedside commode can be helpful.
• Remove locks on bathroom and bedroom doors to prevent them from accidentally locking themselves in.
• Remove small rugs.
• Place carpet and handrails on stairs.
• Put brightly-colored tape on the edge of steps for better visibility.
• Place latches on cabinet doors.
• Place covers over electrical outlets.
• Sharp corners should be padded.
• limit number of mirrors in the house.
• Install safety locks on the stove.
• Make sure knives, scissors, lighters, matches, guns, tools and cleaning and household products, such as paint, thinner and matches and any other potentially dangerous items are out of reach.
• Label all medications and keep them in a locked cabinet or medication box.

A comfortable environment can be highly beneficial for the comfort of the affected person. So keep well-loved objects and photographs around the house to help them feel more safe and familiar.

When an aging loved one is diagnosed with Alzheimer’s disease, the gradual decline results in new challenges, changed behaviors and functional abilities. Caregivers have to think and change strategies accordingly on their own to deal with the loved one’s symptoms.

Caregiving can be physically, emotionally, and mentally exhausting. caregivers are at greater risk for anxiety, depression, and poorer quality of life than caregivers of people with other conditions

It needs great commitment and compassion to look after the sick.

Remember ‘You can’t pour from an empty cup. Take care of yourself first.’

Unfortunately, sometimes we cannot take care of them ourselves.

Also, due to the prevailing demographic makeup of numerous nations, elderly individuals often struggle to have close family members nearby. Consequently, there is an increasing demand for more caregivers and care-giving institutions in many countries.

These elderly citizens contribute so much to our society; it’s time we do the same for them.

(First published in Daily Observer, Bangladesh)

[Disclaimer: The opinions expressed in this article are the writer’s own for informational purposes only. It is not intended as a substitute for consultation with a licensed healthcare practitioner.]

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Tasneem Hossain is a multilingual poet, columnist, op-ed and fiction writer, educator, translator, and training consultant. She writes poems in English, Urdu, and Bengali. As an op-ed writer, she has authored over 130 articles. Her articles deal with day to day life events and deals with personal development issues; and creates awareness about social and human rights issues. Several of her articles and poems are utilized as teaching material in universities and academies across various countries; some have been referenced in university research papers by academics. She is author of three poetry collections—Grass in Green, The Pearl Necklace, and Floating Feather and a book of articles ‘Split and Splice’, she also leads an international poetry project and group called Life in Lyrics. Additionally, four more books are currently in progress