Alzheimer’s - Mind’s Suffering, Heart’s Song


By Antony Cony D’Souza

Mangaluru, Sep 29: Alzheimer’s mind might no longer be active, but he is still got a heart full of mind and heart full of feelings. His heart of mind can be best perceived by his own heart and feelings because his words and his feelings, sentiments, joy and sorrows are located in his hidden mind and heart, thrives to express. Where there is sincerity, there also are heartfelt intentions.

An Alzheimer’s can be best understood by a song ‘Heart’s Memories’ written by an Alzheimer’s himself who shares his heart of mind’s past for his past remembrances has its counterpart in heart's memories. He writes as innocent as a baby, conveying his heart’s mind. While many succeed to convey their feelings others fail to imagine it. Originally appearing in the Kansas City ADRDA Newsletter and reprinted in the August 1984 issue of the Des Moines ADRDA Newsletter, extracts from Heart’s Memories…

I remember you with my heart
My mind won't say your name
I can't recall where I knew you
Who you were or who I was
But I do know you I know
I knew you and I do love you
I know how you make me feel
I remember the feelings we had together
My heart remembers
It cries out in loneliness for you
For the feeling you give me now
Please, please don't forget me and
Please don't stay away
Because of the way my mind acts I can still love you
I can still feel you I can remember you with my heart
And my heart’s memory is the most important memory of all

World Alzheimer's Month is the international campaign by Alzheimer's disease International (ADI) every year, September to raise awareness and challenge the stigma that surrounds dementia. World Alzheimer's Month was launched in 2012. World Alzheimer's Day is on 21 September each year. This is an International campaign week to raise awareness against Alzheimer’s disease.

Physiology of the Alzheimer’s disease (AD):

Alzheimer’s disease is characterized by very tiny microscopic changes in the brain, so small that they can’t be seen on a standard brain scan. It starts in a particular region of the brain, the temporal lobes, which are responsible for aspects of our memory. From there it spreads to the parietal and frontal lobes. As it does, it continues to take more and more of the person’s abilities, their memories, and their ability to navigate them. In some sense, it even seems to rob aspects of our personhood, of who we are. It is a devastating disease for many people, and there is great fear surrounding it. By this they reach the final stages of an insidious and heart-breaking malady/disorder, mental deterioration mostly among elderly. When it strikes, individuals who were once resourceful and capable eventually become totally dependent on others. And then there's the toll on spouses and family members.

One hemisphere of a healthy brain (L) is pictured next to one hemisphere of a brain of a person suffering from Alzheimer disease [Denis Balibouse/Reuters]

Origin of Alzheimer’s disease

The disease itself was first discovered in 1906 when Alois Alzheimer, a German neurologist, observed during an autopsy of a woman who suffered severe memory loss an accumulation of abnormal fibers in the cerebral cortex of the patient's brain. These tangled clumps of nerve fibers and patches of disintegrated nerve-cell branches are associated with the disease. Since then, with the use of the electron microscope, other characteristic changes of the disease have been identified. Scattered throughout the cortex are groups of nerve endings that degenerate and disrupt the passage of electro-chemical signals between cells. These areas are called plaques. The larger the number of plaques and tangles, the greater the disturbance in an individual's intellectual function and memory. Heredity is considered a primary contributor. Some researchers also speculate that a slow-acting virus, drugs, or immunological defects.

Symptoms of early onset of Alzheimer's disease

• Memory loss that disrupts daily life
• Challenges in planning, solving problems
• Difficulty completing familiar tasks
• Confusion with time, place/space
• Trouble understanding visual images, spatial relationships
• New problems with words in speaking, writing
• Misplacing things
• Decrease or poor judgment
• Withdrawal from activities
• Changes in mood, personality

Difference between dementia and Alzheimer’s disease:

Dementia is a syndrome, not a disease. Dementia is a group of symptoms that affects mental cognitive tasks such as memory and reasoning. Dementia is an umbrella term that Alzheimer's disease can fall under. It can occur due to a variety of conditions, the most common of which is Alzheimer's disease.

Anticipatory grief of families, caregivers:

Anticipatory grief is once personal emotional pain of losing a loved one, felt in advance each day where person’s death is fast approaching. To experience a feeling that his dearer once would be soon ‘No More’ or for ‘Good-byes’ are always hurtful, and Alzheimer’s is the ultimate “long good-bye.” Anticipatory grief is extensive, and perhaps inevitable, among Alzheimer’s family members and caregivers because of the slow, progressive, and incurable nature of the disease. If we ask any family members or caregivers of AD a question “What would you say is the biggest barrier you have faced as a family member witnessing slow death of your loved one?” The majority, I am sure they will reply with a heavy heart to the loss of the person they used to eat, sing, walk, laugh, and chat together since his birth or childhood.

Therefore, friends, families and caregivers of someone with dementia experience two difficult psychological states at once:
• Anticipatory grief, coping with the very real bitter feelings of loss for someone who is still alive.
• Ambiguous loss, interacting with someone who’s not fully present individually, socially or psychologically.

Is Alzheimer’s disease (AD) is curable?

While there is no cure for Alzheimer's disease as of now or a way to stop or slow its progression, there are drug and non-drug options that may help treat symptoms. Understanding available options can help individuals living with the disease and their caregivers to cope with symptoms and improve quality of life. Recent research has found that making certain lifestyle changes could help reduce the risk of Alzheimer's disease.

Few lifestyle, food and drink changes that could help prevent the condition

• Lower your blood pressure
• Stay Positive
• Cut down on Alcohol, dementia clearly linked to chronic boozing, say scientists
• Quit Smoking
• Little exercise in middle age could help beat dementia.
• Walking nine miles a week could save you from dementia.
• Stroll stops Alzheimer's.
• Tea cheers; green leaves fight dementia.
• Beetroot can fight dementia
• Apple juice can boost the production of acetylcholine in the brain, which is what the number-one-prescribed pharmaceutical drug Aricept (donepezil) does to treat Alzheimer's, according to recent research. Eat two apples or have two cups of juice per day.

Statistics on Alzheimer’s, India

“Each day none of us getting younger in the real sense but older”. Former MLA J R Lobo said, on Alzheimer’s Day on September 21, 2018. "Youngsters should understand that when they grow old, they may also suffer from Alzheimer’s disease. Hence, value them, take care of them and do not look down upon the older generation.”

The World Alzheimer Report 2015 led by King's College London found that there are currently around 46.8 million people living with dementia around the world, with 4.1 million of them in India, according to a new report which also found that nearly half of all people with dementia globally will live in Asia by 2050.

Is Alzheimer's disease a ‘walking death’?

To label someone with Alzheimer's disease as "walking death" is to completely ignore the humanity which remains until the very end. As the disease progresses the afflicted spouse is less able to fulfill the expected role of a marital partner. Although it appears strongly Alzheimer’s disease a walking death, marriage vows should be fulfilled even if non-afflicted partner goes from being a partner to being a caregiver and thus not becoming an opportunist in the hugs of a new lover to find consolation prize and justifying self-sympathies before your life partner’s demise.

By serving our Alzheimer’s partner we serve God. In the end, let us respond positively and collectively to the cry of the Psalmist: "Do not cast me off in old age; when my strength fails, do not forsake me" (Psalm 71:9). Regardless of our religious traditions, it's a sentiment we all can share. There is no cure for this disease. Even if it seems an odd phrase says, dementia always wins, but at the end we too can win over Alzheimer’s disease by our sincere service to her/him with our humanitarian values/approach.

Alzheimer’s from Sociological point of view by Renee Beard

Sociology Professor, Renée Beard offers voice for those with Alzheimer’s disease asserts that Sociologists, medical sociologist and social gerontologist committed to changing the social environment surrounding aging and Alzheimer’s disease. They try to learn about and translate to others what the subjective experience is for older people who are diagnosed with early stage (or mild) Alzheimer’s disease.

She is of opinion that there is some evidence that social engagement can help to delay the symptoms of Alzheimer's disease. However, people affected by dementia often withdraw from social occasions. Changes in social behaviour are often noted as one of the earliest signs of the condition, sometimes occurring up to five years before someone receives a diagnosis.

By approaching Alzheimer’s from a sociological perspective Beard champions the voices of those most deeply affected by the disease, stemming from a commitment ignited many years ago. “All these years later, I still feel fortunate to have been challenged to suspend my own reality long enough to join people in their worlds, to connect with them, and to tell their stories so others can see from the inside out how it feels to live with what we call Alzheimer’s.”

Alzheimer's from Biblical perceptive

We all know someone, or of someone who is mentally degenerating. Also, we all know of one or more families who are facing years of long-term debilitating care for a loved one who is losing his or her mind. The only passage in the Bible that has to do directly with dementia is found in Ecclesiastes 12:1-8. The author of Ecclesiastes acknowledges the vexing unfairness from a human perspective, yet he offers wisdom to help us deal with it from God’s perspective, entailing the notions of “time and judgment.” In other religions i.e., Hinduism, Islam etc., encouraging lengthy scriptural recitals that might also assist to fight against the dementia, memory loss.

One key to all of us to cope with a generative disease such as Alzheimer’s and dementia is to remember that God is good. No matter our circumstances, God’s character does not change. The God of all Holy Books is the God who is today. His promises still hold true. Our circumstances do not change Him or His purposes for us. God is actively working “all things” together in His grand plan. The Bible tells us, “And we know that for those who love God all things work together for good, for those who are called according to His purpose” (Romans 8:28). For many of us, one of those “all things” could be a degenerative disease. God does not say that all things are good. But He does work for the good in all things. God is a redeemer by His Mercy we are enduring. ‘My Grace is sufficient’ says the Lord, 2 Corinthians 12:9 in every occasion although we may not be able to visualize it completely. Knowing this, an Alzheimer’s sings silently, we too sing understandingly that ‘God is Good All Time’ for ‘We All Need God’. 


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Comment on this article

  • Reshma Lobo, Mangalore/Kuwait

    Fri, Oct 19 2018

    Excellent article.....I know how difficult it is to those who are dealing with this disease...and for those who take care of them...we need to give them lot of patience & love...

    Thank you Antony Sir for giving us the inner knowledge of Alzheimer's disease... Keep writing...

    Reply Report Abuse Agree [2]

  • Shuhaib TK, Calicut /Doha

    Wed, Oct 03 2018

    Very good & informative article, keep writing Sir.

    Reply Report Abuse Agree [3]

  • Eva Wilma Pinto, Doha/Mangalore

    Mon, Oct 01 2018

    Very good article. unique and very informative. Keep going.

    Reply Report Abuse Agree [4]

  • Norbert Pereira, Mangalore-Doha-Qatar

    Mon, Oct 01 2018

    Very informative and good article Cony. I am sure you might have spent hours for collecting various information for writing this article. Keep writing …………God bless you.

    Reply Report Abuse Agree [5]

  • R. Ashraff, Belman

    Mon, Oct 01 2018

    Alzhemier's song is very touching. A Tear Drop should roll out because we are also human. This is God's fraternity and bond of love and responsibility, even animals shed tears. Let us not fail to understand Alzhemiers's sorrow and to assist. I wish and pray, Let Lord forbid this disease. WELL written Sir. Let A|lah Bless you greatly.

    Reply Report Abuse Agree [4]

  • Pius Rolphy, Kinnigolli, UK

    Mon, Oct 01 2018

    Thanks for providing a wealth of information on this Alzhemier's Disease. Appreciating for providing one way stop information. We are proud of you Mr. Antony, being in Qatar still busy with your thoughts for others well being or Humanitarian Thoughts.

    Reply Report Abuse Agree [4]

  • Mtr.Cyril A. Cutinha, Manjeshwar

    Mon, Oct 01 2018

    Article gives lots of information, interest in reading such heart touching unique article. Congratulations to Mr.Antony D Souza

    Reply Report Abuse Agree [5]

  • Stany, Mangaluru

    Mon, Oct 01 2018

    Wishing dementia, alzheimer's healing months ahead.

    Reply Report Abuse Agree [7]

  • Vivian L P D Souza, Bondel/Doha Qatar

    Mon, Oct 01 2018

    excellent and informative artical ....congratulations conybab...keep on writting ..

    Reply Report Abuse Agree [5]

  • Vincent Rodrigues, Katapadi/Bangalore

    Sun, Sep 30 2018

    Excellent and touching the heat too.

    Reply Report Abuse Agree [3]

  • Fr.Vincent D' Souza, Kulur-Mangalore

    Sun, Sep 30 2018

    Very good heart touching article by Cony .God bless you.

    Reply Report Abuse Agree [9]

  • Charlie Henry Roman, Mluru

    Sun, Sep 30 2018

    Today in the city there was a beautiful Alzheimers's run to create Awareness.
    It was an excellent run
    Let's all pray and contribute our service to Alzhemier's.

    Reply Report Abuse Agree [8]

  • C.G.Sequeira, Mangalore

    Sun, Sep 30 2018

    Another wonderful and informative article by Mr.Antony Cony D'Souza. It will help many people to know more about Alzheimer's -Mind's suffering. Thanks Antony Cony keep writing.God bless you.

    Reply Report Abuse Agree [9]

  • Bonaventure Johnny D Almeda, Mangaluru..Bantwal

    Sun, Sep 30 2018

    Productive, great Awareness installing information.
    Lord Bless our Alzhemier's world.

    Reply Report Abuse Agree [9]

  • Kishoo, Barkur

    Sun, Sep 30 2018

    Wonderful article. Specially the poem is heart wrenching ... Thank you Sir, Antony Cony.

    Reply Report Abuse Agree [10]

  • N. Ganesh Karthik, Mangalore, Oman

    Sun, Sep 30 2018

    I do agree with Mr. Kishore
    This song is a rare glimpse, insight on to the Alzhemier's s lonely feelings
    about which I am sure this busy world knows not.
    Great effort. Complete coverage.

    Reply Report Abuse Agree [9]

  • Arun, Doha

    Sat, Sep 29 2018

    very good article. too good cony.. keep going

    Reply Report Abuse Agree [9]

  • Deepak shetty, KUNDAPUR/Qatar

    Sat, Sep 29 2018

    Very informative article . You must have done lot of research. Keep writing

    Reply Report Abuse Agree [10]

  • Johny Goveas., Mangalore, Mumbai

    Sat, Sep 29 2018

    Christian Perceptive was good one....Keep Writing.

    Reply Report Abuse Agree [11]

  • Jossey Saldanha, Mumbai

    Sat, Sep 29 2018

    There is no Christian Perceptive when you buy Blood ...

    Reply Report Abuse Agree [13]

  • geoffrey, hat hill

    Sat, Sep 29 2018

    Coconut oil is gaining popularity for it's anti- Alzheimer's properties, even though not endorsed by allopathic medical fraternity.

    Reply Report Abuse Agree [15]

  • Jossey Saldanha, Mumbai

    Sat, Sep 29 2018

    Every morning stick your tongue out & move it from left to right at least 20 Times ...

    Reply Report Abuse Agree [13]

  • Francis, Shirva/UK

    Sat, Sep 29 2018

    Very informative article, keep writing Anthony.

    Reply Report Abuse Agree [14]

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