Early onset Alzheimer's: Living with the unthinkable

One of the most mysterious and discouraging ailments is Alzheimer’s disease (AD), “a progressive, degenerative brain disease” affecting the memory, thinking, and behavior of more than four million Americans (USNLM/NIH 2006). With Alzheimer’s, a person’s “nerve cells in the brain (neurons) collapse and die, making it diffi cult for the brain’s signals to be transmitted properly” (CCHS 2001). This affects the day-to-day living, social life, and relationships with those closest to the person with AD.

In the most common form of late onset AD, symptoms show up after the age of 60, but the prevalence of early onset AD remains alarmingly high—up to 10 percent of all AD cases. Early onset AD is more closely tied to genetics and can show up in a person’s 30s and 40s (Alzheimer’s Association 2004), or as late as their 40s and 50s (CCHS 2001).

Alzheimer’s disease leads down the slow and painful road to death. According to some (Bird 2005; Alzheimer’s Association 2004), death occurs within 8 to 10 years of onset, while others place it at within 15 years (USNLM/NIH 2006). The typical range is anywhere between 1 to 25 years (Bird 2005). The family of the person with early onset AD therefore has to deal not only with the debilitating effects, but also with the stages of grief over their loved one’s looming death. Facing this can lead to dread and despair for all involved, and most assuredly results in depression and anxiety for many victims and caregivers (ICS 1998).

Early onset Alzheimer’s disease: Painful symptoms

Imagine that you are a man or woman in your midforties. Your three children are in their midteens and you begin to see some of the early symptoms of Alzheimer’s in your life: you hear yourself repeating statements, you misplace items, you have trouble finding the names for common and familiar objects, you get lost in familiar places, your partner complains of your personality changing, and you lose interest in things you once found enjoyable (USNLM/NIH 2006). After a little research, you realize that you could have early onset Alzheimer’s disease, so you make an appointment with your family practitioner and go through a battery of diagnostic tests. When done, she then tells you she is 90 percent sure you have early onset Alzheimer’s disease.¹ She tells you that the prognosis is poor and that most patients live only another eight to ten years; they begin to show a signifi cant decrease in health and cognitive function all along the way. Total debilitation is common, and most victims of early onset Alzheimer’s disease can no longer understand language, recognize family members, or perform basic activities of daily living like eating, dressing, or bathing (USNLM/NIH 2006). When you ask about the dying process, she says that these kinds of deaths usually result from a lack of vitality (inanition), malnutrition, or pneumonia (Bird 2005).

Early onset Alzheimer’s disease: Affects on caregivers

Convinced of the debilitating effects of Alzheimer’s disease in your own life, you begin to think about your partner and children, your boss and coworkers, as well as friends and family. You and your partner do some Internet research and come across some important fact sheets about Alzheimer’s disease and how to cope with it as a family (see bibliography). At your next visit with your doctor, you ask about the pain that family members will experience. The physician is impressed with your research and adds that many caregivers are surprised and dumbfounded by the changes in personality and behavior that Alzheimer’s disease brings. You are warned of things like anxiety, suspiciousness, agitation, delusions, and hallucinations (Alzheimer’s Association 2004). In addition, the physician adds, “Because more than 70% of people with Alzheimer’s disease live at home, where family and friends provide most of their care . . . it places physical, emotional and fi nancial stress on caregivers as they assume growing responsibilities that may include meeting physical needs, managing daily routines and making important medical and legal decisions” (Alzheimer’s Association 2004). You are now aware of the intense burden you will become physically, financially, socially, and mentally.² Both you and your partner are now fi lled with despair. Despite the incredible love you have for each other, the situation seems hopeless.

The question, the challenge

However frightening, I believe that there is an answer that can bring joy and delight in the toughest of situations. While many resources aim to help a person cope,³ the Bible does much more than that—it offers a way to thrive. The apostle Paul states in Romans 5:2–5, “And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.”⁴ James said, “Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must fi nish its work so that you may be mature and complete, not lacking anything” (James 1:2–4).

What, then, can we do when a loved one comes down with the disease? This article presents principles that may help people affected with Alzheimer’s disease. I do believe it is possible to help those affl icted with early onset Alzheimer’s disease to take delight in God in the middle of their horrible dilemmas. I have found six principles that can give people a holistic Christian worldview to help them in this situation. These principles will also help us working with church members who have the disease.

Principle one: Alzheimer’s disease teaches us about true love

Caring for a person with Alzheimer’s disease is very difficult: it requires giving and giving with very little in return. It begs the question, What is love? Most of the time when we say we love someone and give them our love, they give something in return; so we become programmed to think of love in terms of giving and getting in return. Yet we are challenged in Scripture to love as Jesus has loved us (John 13:34). We are taught in 1 John 4:10 that love gives without the thought of return: “This is love: not that we loved God, but that he loved us and sent his Son as an atoning sacrifi ce for our sins.”

Despite the ugliness of the effects of early onset Alzheimer’s disease on victim and caregiver alike, we are reminded that true love is not reciprocal. We cannot care for a loved one with Alzheimer’s disease and live the illusion that we will be cared for in return by them.

Principle two: Alzheimer’s disease instructs us as to the true nature of human dignity

The Bible clearly says that God views human dignity as arising from their being, not their doing. We are human beings, not human doings. Psalm 139 expresses a beautiful song about God’s creativity and purpose in making us and in guiding us through life. We are instructed to think of each one of our days and all the events therein as arising from God’s foreordained purpose and plan. So when we think about a person becoming aware of an Alzheimer’s diagnosis, God is there and has been there long before the person was even created. He is not shocked by the medical finding, nor is He in dismay. He thinks no less of the person whose mind becomes increasingly more crippled. God’s love for the severely mentally retarded is as strong as that for the nuclear physicist, with His love based on our being, not our doing.

When God created human beings, He made them in His own image (Gen. 1:26, 27). We mirror, as it were, the personality and character of God in that He has emotion, thought, and will. When we see Alzheimer’s disease in a loved one, we can become quick to assume that the mirror is broken, if not shattered. After all, where is human dignity in uncontrolled bowels? Or in locking a 55-year-old man up as if he were a toddler?

Yet the truth about Alzheimer’s disease is that it reminds us, even instructs us, to look at human dignity as dwelling in our being, not our doing. A person has worth because God created them with worth, not because they do something worthy.

Principle three: Alzheimer’s disease teaches us about God’s love

Early onset Alzheimer’s disease can remind us of God’s incredible love. Though we might have spiritual dementia, God will never forget us. He loves us not because we are something special or because we can outperform others or even increase our performance. We often forget our ability to lose our mind, and God’s ability to still shower His mercy on us. Titus 3:3–7 reminds us: “At one time we too were foolish, disobedient, deceived and enslaved by all kinds of passions and pleasures. We lived in malice and envy, being hated and hating one another. But when the kindness and love of God our Savior appeared, he saved us, not because of righteous things we had done, but because of his mercy. He saved us through the washing of rebirth and renewal by the Holy Spirit, whom he poured out on us generously through Jesus Christ our Savior, so that, having been justifi ed by his grace, we might become heirs having the hope of eternal life.”

This passage shows us that we have done such foolish things (v. 3), and yet, it is as if we still believe that God loved us because of the “righteous things we had done” (v. 5). Have we forgotten what was just stated in verse 3? Do we have a form of convenient spiritual dementia that allows us to think that we somehow merit God’s kindness? Alzheimer’s disease teaches us that God loves us and that His love for us is not based on our ability to deserve it.

Principle four: Alzheimer’s disease reminds us of the fragility of human life

Isaiah 40:6–8 instructs us as to the glory of humans being like the flowers and our flesh being like grass. In time, it fades and withers. Only God remains unchanging. Scripture reminds us that our very breath comes from God (Acts 17:24–28). He holds all things together by His powerful word. While no loving person would wish early onset Alzheimer’s disease on anyone, for some reason God has allowed it and can use it to remind us of our own mortality, our own fragility, and our own need for Him.

We do not live as the masters of our own destiny. We have a God who lives in the heavens and does exactly as He pleases (Ps. 115:3). So lest we allow the pendulum of our thinking to swing either to the extreme of our human mastery or to the extreme of our victimhood, Scripture and a wholly Christian worldview remind us to think soberly of ourselves and our life here.

Principle five: Alzheimer’s disease instructs us on the value of relationships

Jesus told a story in Luke about a farmer who had it all wrong:

“Watch out! Be on your guard against all kinds of greed; a man’s life does not consist in the abundance of his possessions.” And he told them this parable: “The ground of a certain rich man produced a good crop. He thought to himself, ‘What shall I do? I have no place to store my crops.’

“Then he said, ‘This is what I’ll do. I will tear down my barns and build bigger ones, and there I will store all my grain and my goods. And I’ll say to myself, “You have plenty of good things laid up for many years. Take life easy; eat, drink and be merry.” ’

“But God said to him, ‘You fool! This very night your life will be demanded from you. Then who will get what you have prepared for yourself?’ “This is how it will be with anyone who stores up things for himself but is not rich toward God” (Luke 12:15–21).

The man had possessions and accomplishments but had failed to develop a life that was oriented towards God and His values. God seems to be much more concerned with how we treat others than what we accomplish or accumulate. The one thing that Alzheimer’s disease does to the caregiver is that it slows the person’s life down immensely so that face-to-face time with the sufferer becomes a necessity. Life, in terms of things to do and people to impress, freezes, and our values come into question. While this is a very diffi cult process, the person who wants to submit to God and become more like Christ will grow to trust God even in this time of their life. It is the nature of the Christian life. Though not necessarily immediate or complete, it is a process that God works in us to change us and renew us day by day.

Alzheimer’s disease teaches us the value of relationships over achievements and our sundry collections. We have to slow down and care for the person in need. It is a form of submitting to that person when we place our agenda beneath their requirements.

Principle six: Alzheimer’s disease reminds us that we are pilgrims on earth

Early onset Alzheimer’s disease brings you face to face with the reality of pain and the ultimate questions in life. Why are we here? What is life for? Is this all there is? When we look at Scripture, including Hebrews 11:13, which reminds us that we are “strangers and pilgrims on the earth” (KJV), we see that in the past great Christians of the faith looked forward to a better land, a better country, a heavenly one. Living with pain as a Christian reminds us to long for heaven and to live our lives with the understanding that this physical existence is only part of the big picture. We know that we can’t please God without faith, trusting in Him (Heb. 11:6), and that Abraham had to make similar choices (Heb. 11:8–10, 17–19). Scripture encourages us to have this view of ourselves, living as aliens and strangers here on earth (1 Pet. 2:11), rather than thinking that we have all that we need here and now.

The suffering of Alzheimer’s can and should draw us to the Father, who loves us and has a plan for our lives set out from the beginning of time. It reminds us that we were not only created for life here on earth, but this life can be described as shabby compared to the life we will have with God for all eternity.

Conclusion: Christians can have hope and joy in the worst of situations

The pain and sorrow of early onset Alzheimer’s disease is pervasive. It undoes the lives of the sufferer and their caretaker. Few paths of suffering are worse, especially without a healthy mind-set and belief system. Alzheimer’s disease can lead directly to doubt and despair, and to dread and disillusionment. Only belief in a Christian worldview, steeped in Scripture and a deep relationship with God, can make something of value come from this horrible situation.