Dr. Benjamin Mast is an Associate Professor in the Department of Psychological and Brain Sciences and an Associate Clinical Professor in Geriatric Medicine at the University of Louisville. His new book Second Forgetting: Remembering the Power of the Gospel during Alzheimer’s Disease reminds us that the gospel knows no boundaries, including Alzheimer’s Disease.
1. What do we know about Alzheimer's disease and how it should be treated that might be different than what we knew in previous generations?
Alzheimer’s is a progressive brain disease that begins in memory centers of the brain and continues to spread throughout the brain, taking more of the person with it. Alzheimer’s disease is often recognized much earlier in its progression than in previous generations. That is, people are diagnosed at an early stage more often than in the past. This means that they are less impaired when initially diagnosed, which gives us greater opportunity to talk with them about their diagnosis and get their input on care. Alzheimer’s is now treated as a chronic illness. Most people will live for many years with this diagnosis and its disabling effects.
We now recognize that even when we can’t do much medically to change the trajectory of decline in Alzheimer’s, we can do quite a bit to enhance care for the person in a way that maintains a sense of personhood and enhances their quality of life. Though Alzheimer’s disease can be incredibly difficult, not everyone with Alzheimer’s is miserable. We should seek to care for them in a way a way that honors and engages the person and makes the most of their remaining time. People with Alzheimer’s continue to have the same needs as people without dementia and this is something pastors and churches can step into.
2. It seems what families most fear is two things: that a close relative will be diagnosed and that they (the caregiver) will be ill equipped to respond with love and adequate care. How do you respond to those fears?
Our first response should be to acknowledge that these are understandable fears. No one wants to get Alzheimer’s or see a loved one live and die with it. Alzheimer’s is one of the most feared diseases in our world today, and among older people it is the most feared. Our time and energy are not well spent worrying about Alzheimer’s that has not yet come. Instead, we pray that God will “teach us to number our days, that we may gain a heart of wisdom” (Psalm 90:12). How can we make the most of each day, living with a sense of urgency in our relationship with God and others, while trusting him with the cares of tomorrow? If you knew you might be diagnosed with Alzheimer’s in the future, how might that change your perspective today?
It’s also reasonable to suspect that we won’t be fully equipped to provide care on our own—no one can do this alone. We need other people. We also need God and his provision to be able to give loving care that meets the physical, emotional and spiritual needs of the person with Alzheimer’s. Family members who provide care also need the Lord to meet them in their pain, fatigue, fear and grief. In the midst of this trial we all need to relearn to trust in the Lord for his presence and provision. Alzheimer’s seems like more than we can handle, but God wants us to remember who he is, what he has done, and what he has promised about the future. He will care for you, he will help you, and he will provide.
Not even Alzheimer’s can separate us from the love of God or remove us from his sustaining care.
3. What is unique about the biblical ethic of the imago dei that changes that way we think about Alzheimer's patients?
We live in a hyper cognitive society where our personhood and value are often closely tied to intellectual ability and achievement, and in this context people with Alzheimer’s are often seen and treated as less than full persons. If we are only the sum of our cognitive capacities then Alzheimer’s would indeed take away our personhood. The Biblical understanding of the person was never tied to intelligence or even to our ability to contribute something to society. Our identity is deeply rooted in our status as image bearers of God. Even in our broken cognitive state, we are nonetheless fully redeemed, fully known and fully loved by God. Not even Alzheimer’s can separate us from the love of God or remove us from his sustaining care.
The biblical view of personhood gives us hope. Even when Alzheimer’s robs a person of the ability to speak and we can no longer know their thoughts or heart, God knows them and intercedes with prayers on their behalf. Even the most severely impaired people matter to God and they should matter to us. They deserve honor, respect, and loving care, even when they cannot respond with spoken gratitude. We love our neighbor with Alzheimer’s because God loves us, not because they love us back.
4. How can pastors both encourage and equip their people to face the challenges of Alzheimers, both for the victim and the caregiver?
Pastors seeking to help address the needs of people with Alzheimer’s and their families can address four E’s of Alzheimer’s ministry:
Educate – Pastors can take the lead in becoming educated about Alzheimer’s disease and what individuals and their families face over the course of the illness. This allows for better recognition of what is happening and a more sensitive approach to ministry.
Equip – Help equip the church to provide practical and spiritual care. This might involve providing the resources to start a support group, a respite program for caregivers, or a small group who brings the church to those who can no longer come to the church building.
Engage – One of the best things a pastor can do is to encourage the church to engage individuals and families affected by Alzheimer’s and other dementias. Many families feel that the church avoided them or forgot about them once Alzheimer’s set in. They feel alone. When the church makes a commitment to stay present and engages both the person with Alzheimer’s and their family, they will better understand how to minister to them.
Endure – Pastors and church communities need to endure and journey with these families throughout the course of the illness. The families I’ve met in clinical situations long for someone to journey with them through this. They need people to continue to love them, pray with them, and help them remember and trust in the Lord. They need people who aren’t going to avoid them when things get really tough.
When the church makes a commitment to stay present and engages both the person with Alzheimer’s and their family, they will better understand how to minister to them.
5. What hope can you give to Alzheimer's patients and to their families?
Even when we forget, God will never forget us. This is critical because our hope rests upon what God has done and continues to do, not what we have done or can do. Even in late stages of Alzheimer’s, when his children can’t seem to remember him and can’t do much for anyone else, their status and value to God has not changed in the slightest. God never accepted us because of what we could do, or think, or remember. God accepted us because of what Jesus did on our behalf, because we couldn’t do it. For people struggling with what they can no longer do or no longer remember, this is very good news. Because God remembers us, we can find strength for today and hope for the future.
Daniel Darling is vice-president of communications for the Ethics and Religious Liberty Commission. He is the author of several books, including his latest, Activist Faith.
