I’ve waited for years for a book that combines robust biblical theology with extensive clinical experience with dementia. I thank God that we now have one in Dr. Benjamin Mast’s Second Forgetting: Remembering the Power of the Gospel During Alzheimer’s Disease.
Mast’s major thesis is that proper spiritual preparation and ongoing input will go far toward allowing a person with dementia to continue remembering the Lord and in some ways to allow for spiritual vitality even in the midst of cognitive decline. I like this idea and have seen it authenticated in some of my patients experiencing dementia. Unfortunately it is far from universally true. Some of my most godly patients, who received excellent spiritual stimulation, became really nasty and profane through the course of their disease.
Mast, who serves as a licensed clinical psychologist, professor of psychological and brain sciences and geriatric medicine at the University of Louisville, and elder of Sojourn Community Church, has chosen not to dissect the neuroanatomy of spirituality. But we now understand that there’s a part of the brain where our spiritual thoughts are processed. Perhaps that’s what Paul is getting at when he writes, “I will pray with my spirit, but I will pray with my mind also; I will sing praise with my spirit, but I will sing with my mind also” (1 Cor. 14:15). Unfortunately, that “spiritual” part of our brains may deteriorate faster than others. If at the same time our insight and inhibitions deteriorate, it can be a powder keg leading to a great deal of frustration for the one seeking to provide spiritual help. That being true, there’s no question that ongoing spiritual encouragement for the patient suffering from dementia seems to increase the probability of a favorable response in their spiritual lives.
One of the challenges of increasing dementia is the fact that life is progressively lived in the present tense. There is less awareness of the past (though Mast provides a number of suggestions for ways we can help patients reestablish their links to the past) and a limited awareness of the future (though early in the process patients may spend a lot of time worrying about what the future holds). As a result, life becomes totally about the present. And yet we must never discount the value of the present. God himself exists in the present tense. It matters a lot that I feel good right now even though I may not remember it in 30 minutes. Those relating to demented patients must equally value the present moment when with the patient. In addition to the patient’s insensitivity to past and future, their world continues to constrict. They’re no longer interested in news of the world outside, and they become less interested in the lives of others around them, eventually becoming interested only in themselves. One of the other challenges is the failure of initiative on the part of patients with dementia. The default is to sit and do nothing. Mast gives a number of helpful ways to engage them.
Patients experiencing dementia are still full persons made in God’s image and continue to manifest this dignity. The job of the caregiver and the church must be to show the respect required by that dignity. Few churches have any structure that allows for more than haphazard measures of assisting those with dementia or those involved in their care. That is a grievous error. The church has an important role early in the course of dementia, when the patient becomes aware of decline, and may be increasingly sensitive to need for God and open to the gospel message.
Second Forgetting provides a realistic discussion of the sorry state of prevention and medical treatment for dementia. No question it is discouraging. Yet even in that context much can be done to improve quality of life. Mast encourages us all to prepare for coming dementia, since approximately one-third of Americans will die with some degree of it. I’ve found it helpful to encourage my patients to write a letter to their family while they are cognitively intact about the type of future care they want if they become demented. This request should emphasize their desire to be encouraged to continue doing what they can—without criticism when they fail. It should give their loved ones permission to admit them to a long-term care facility if home care becomes difficult—without feeling guilty about it. It should discuss end-of-life care in the context of dementia and set limits to aggressive life-sustaining treatments. Since most who die of dementia do so after ceasing to eat, I recommend the letter clearly ask that no artificial nutrition or hydration be provided. Finally, since it’s becoming an increasing reality in this country, the letter should prohibit physician-assisted suicide or euthanasia. This letter should be shared with the immediate family and kept on file with an advance directive.
Dementia is going to be increasingly prevalent as the baby boomer generation ages. The burden of care will be borne by fewer people in the workplace, and the dangers of inadequate care will increase. The church will have to step in to do more for this needy group. It will require a lot of day-to-day care of physical needs. Perhaps more importantly, believers in Christ must be present to continually remind them of their value as made in God’s image and redeemed by Christ. This may decrease the possibility of their “second forgetting.”