Finding Grace in the Face of Dementia

Finding Grace in the Face of Dementia, John Dunlop, MD (Crossway, 2017)

What a helpful, wise and compassionate book this is. 

John Dunlop writes with decades of experience as a geriatrician, personal experience of the dementia of three of his and his wife’s parents, and his own longstanding Christian faith.

“Over the years as I have been confronted with dementia, I have failed to recognise any purpose for it, yet I believe it is my responsibility to search out what God’s reason may be. This book is my attempt to explore God’s possible purposes in allowing this horrible disease. But even when I do not fully understand, I have learned I can still trust him.“ (p. 16)

The overarching message is that all people are made in the image of God, and therefore possess inherent dignity and worth. God does not have a gradation of his image: “Human dignity is equally as true of the Nobel Laureate as of the most severe dementia sufferer who is totally dependent on others.” (p. 24) There is great value in the fact that people with dementia still experience feeling and are capable of relationships.

“The experience of dementia can help teach us what our true value is, and embracing it may make the prospect of dementia less threatening and fearful.” (pp. 15-16)

Dunlop explains the facts of dementia: its various types, how diagnosis is made and when it should be made, what some treatment options are, and when to consider medical care directives.

He describes what it feels like for the person with dementia, and then the experience of being a caregiver, acknowledging “the patient is not the only victim of this dreadful disease; caregivers are just as much, if not more, affected by it.” He doesn’t shy away from or avoid the challenges that many face.

Dunlop then considers what he believes is the heart of the issue: “honouring God in and through the tragedy of dementia”. These aspects include:

• recognising the things that God values - such as people, feelings, relationships, and the present moment. 
• respecting the dignity of those with dementia - with our time and energy, respecting their autonomy as much as possible, preserving their dignity, and entering their world. 
• meeting the physical, social, emotional and spiritual needs of those with dementia, as well as their carers. 
• how the church should respond. Importantly the church must teach the gospel, be honest that we all will suffer and what it means to be fully human. Obviously serving and caring for those with dementia and their carers should be high on the list, particularly spiritual needs. 

One particular comment of Dunlop’s struck me:

“Allow me to share with you one of my dreams: picture a local church taking time to commission a caregiver to the ministry to which God has called them. We commission our missionaries, our pastors, and our Sunday School teachers. How about our caregivers?” (p. 150)

He wants us all to grow through the experience of dementia - growth in prayer life for all as they lament, ask, give thanks, and trust God. There can be growth for those with dementia, for caregivers, for the church and for our wider community as we seek to care for, love, and honour those who live with this difficult and heart-wrenching disease.

Dunlop finishes by practically addressing end of life issues, and then leads the reader to the promises of God and life eternal, where there will be no more dementia, no more death, or mourning, or crying, or pain.

This is an openly Christian book, offering hope and solace to those to those who already cling to the promises of God, both now and in the life to come. As such, it will have very real value for those in our churches who are affected by dementia. I think it could be given to every person (and their caregivers) with a dementia diagnosis, as a way of reaching out and beginning the process of support and care, recognising the challenges that lie ahead.

Being Mortal

Being Mortal, Atul Gawande

Gawande has written this sobering, honest, critical and yet hopeful book “about the modern experience of mortality - about what it’s like to be creatures who age and die, how medicine has changed the experience and how it hasn’t, where our ideas about how to deal with our finitude have got the reality wrong.” 

As he says:

“Our reluctance to honestly examine the experience of aging and dying has increased the harm we inflict on people and denied them the basic comforts they most need."

He considers the medicalisation and institutionalisation of dying, and how it comes at cross purposes to what many want in their final days and years: choice over whether to remain in your own home, freedom over what you eat & drink, how we socialise (or not) with others, and the ability to make your own decisions about care, treatment and death.

He moves through topics considering how independent we are through most of life, but things start to fall apart as bodies decay and age naturally. We become creatures who need more help, and who become more dependent on others.

He consider what he terms the failure of the nursing home experiment, noting they were never designed for the purposes to which they have been put, with the three things that plague them: boredom, loneliness, helplessness:

“Our elderly are left with a controlled and supervised existence, a medically designed answer to unfixable problems, a life designed to be safe but empty of anything they care about.”

Gawande uses personal stories to illustrate many of his points, including very sad situations of people over-treated with increasingly painful and pointless procedures, and given false hope, who, along with their family, were never properly prepared for their inevitable death. He contrasts this with well done hospice care. He also weaves the story of his own father’s decline and death, and the choices they had to make along the way.

“Our responsibility, in medicine, is to deal with human beings as they are. People die only once. They have no experience to draw on. They need doctors and nurses who are willing to have the hard discussions and say what they have seen, who will help people prepare for what is to come - and escape a warehoused oblivion that few really want.”

He notes how hard it is for patients, family and doctors to have these hard conversations, but having them helps everyone to process the reality, and to be clear about when they want, can expect and what is possible. He suggests some of the things we should be talking about at this stage are:

• What do you want? (eg to be at home, to manage the pain, enjoy remaining days) 
• What are your biggest fears and concerns? (eg to not be able to go home, to be ventilated) 
• What goals are most important to you? (eg. being able to walk, care for yourself, eat, have autonomy over day) 
• What trade-offs are you willing to make, and which ones are you not? (this can help with risky surgery decisions, etc) 

Personally, I would have loved some consideration about how faith affects people’s view about these last days, but that was not where this book was headed.

He touches on assisted suicide, and in the end is not greatly supportive of it: “Our ultimate goal, after all, is not a good death but a good life to the very end.” As he notes, “assisted living is far harder that assisted death, but its possibilities are far greater, as well.”

I appreciated some of his final comments:

“Technological society has forgotten what scholars call the “dying role” and is important to people as life approaches its end. People want to share memories, pass on wisdoms and keepsakes, settle relationships, establish their legacies, make peace with God, and ensure that those who are left behind will be okay. They want to end their stories on their own terms …the way we deny people this role, out of obtuseness and neglect, is cause for everlasting shame. Over and over, we in medicine inflict deep gouges at the end of people’s lives and then stand oblivious to the harm done.”

“If to be human is to be limited, then the role of caring professionals and institutions - from surgeons to nursing homes - ought to be aiding people in their struggle with those limits”.

This is an excellent, thoughtful analysis that could help many start these important conversations with those they love.