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by Robert B. Santulli and Kesstan Blandin
Dartmouth College Press, 2015
Review by Christian Perring on Aug 30th 2015

The Emotional Journey of the Alzheimer's Family

The Emotional Journey of the Alzheimer's Family provides a guide to common psychological reactions of people diagnosed with dementia to their condition, discussion of how family members and caregivers cope or fail to cope with the situation they find themselves in, and practical suggestions for how to survive. The authors are a psychiatrist and a psychologist. They say nothing directly about their personal experience in giving treatment to those in need, but they do provide a great many examples of people showing the emotional reactions they are discussing. Presumably, these are versions of their own clinical experience or are taken from stories they have heard from others. They certainly help to make their points clearer and make the book more easy to read, although they also make the book longer and after a while the reader may be tempted to skip the anecdotes since they mainly repeat the points just made in the text.  In some places, they form the basis for a fuller discussion of the ideas being set out.

Naturally, the book focuses on how painful it is to accept that someone has Alzheimer's or other form of dementia, and how people tend to avoid this by various forms of evasion or minimization; the authors use a Freudian formulation of "mechanisms of defense" but the basic idea is simple enough. They point out that this can be a good idea if it makes life easier, but it can be problematic if it means that important aspects of the ill person's life are not being addressed or it leads to dangers to other people.

The book then focuses mostly on the life of the Family Care Partner. They use this phrase throughout the book to refer to the person who has primarily responsibility for the care of the person with Alzheimer's. They use this rather clumsy phrase in an apparent effort to recognize that the relationship is not completely one-sided, and to recognize that the relationship is a partnership.  However, it's not a phrase that is in common use, and while there may be good intentions behind its use, it makes the text flow less well.

There are many insights in this book that make it useful. The authors talk a lot about the grief that family members experience for the loss of central features of their loved one, even while the person is still alive. They emphasize that grief is a normal emotion and is part of a natural process.  They specify that it needs to be distinguished from depression.  There is also a good deal of stress in being involved in the everyday work of looking after someone who has the symptoms of Alzheimer's.  All of this makes the job extremely difficult, and places the caregiver at risk for both emotional and physical problems of their own.  The authors spell out various ways to minimize the risk to the caregiver, in seeking help, using respite services, and making sure that the caregiver maintains their own life and interests outside of caregiving. They point out that caregivers need to look after themselves in order to be able to continue in the role of giving care, so it is not selfish to give priority to their own needs.  One of the ideas they take to be especially important is that caregivers need to make contact with other caregivers, and be part of a larger community of people who understand and can discuss the challenges of their chosen role.

In making generalizations about Alzheimer's families, the book obviously can't cover all variations. It's main claim is that grief is at the emotional center of a family's experience, but they acknowledge some families don't have typical reactions. Some parents are difficult and children will experience less loss of practical help or emotional support as their parents become more demented. Indeed, while being a caregiver is hard work, it is possible that the progress of dementia may make a child-parent relationship easier as the parent's difficult personality becomes overwhelmed by the symptoms of dementia.  Of course, there may be other cases when a difficult personality is made worse by the character changes that come with dementia. While the book mentions these sorts of issues, it does not examine them in great detail.

The authors discuss the problem of abuse that comes with living with or caring for people with dementia. They make the important point that while the person with the illness may not be able to directly recall episodes of emotional or even physical abuse, the experience might still have an effect on the person's mood and thought.  It is easy to slip into thinking that it makes no difference what one says to a person with moderate or severe dementia because they won't remember, but it is possible and even likely that there are long terms benefits or harms from the treatment. So it is important to treat the person well even when they don't have verbal recall of how they have been treated.

The authors also point out that dementia patients are susceptible to financial abuse. This is obviously true, and it is easy to understand how lingering resentment about the sacrifices the caregiver is making can lead them to rationalize using the demented person's money as compensation for their effort. That can be problematic. However, the authors don't pay much attention to the difficulties of what counts as financial abuse. They say, for example, that it is wrong to keep the change when making a purchase for the demented person.  They don't acknowledge the obvious large grey area that caregivers have to deal with when making financial decisions for the person, especially when they live in the same household and there isn't a clear separation between their financial domains. The demented person may be eating together with the caregiver, paying rent or a mortgage on the same dwelling, or compensating the caregiver for the lost income involved in caregiving. So many living expenses will be shared.  It can be difficult or impossible to consult the demented person about their wishes because they will be confused about broad plans or financial details. These kinds of problems put caregivers in a dilemma in deciding about what is fair and what is unfair. It would be helpful to have suggestions about how caregivers can work through these sorts of problems without having to worry whether  they are financially abusing the people they are looking after.

A more theoretical issue arises in the author's attempt to distinguish grief from depression. DSM-5 has removed the grief exclusion from the criteria of major depression, and so the distinction between grief and depression is now much less clear. Or at least, dysfunctional grief can count as depression. The DSM-5 change highlights the possibility that had already been recognized that some grief is not normal or healthy. The question is when emotional pain is part of a larger working-through of changing relationships and death that a person must undergo in order to come to terms with their loss. This in turn raises the question of what is lost as a loved one gradually decreases in their ability to remember the past, remember information, sustain relationships, and plan for the future.  For family members  and close friends, this all leads to major changes in how they can interact with the patient. Shared activities change or stop, emotional connections change, and often the person with Alzheimer's is not able to play the role they used to.  This means that the family members and friends have to adjust a great deal. They will lose of much of what they had with the patient.  So there is much to grieve.

Yet all relationships change, and we are often able to adjust to those changes. One might identify what is special about Alzheimer's is not just the extremity of the losses, but is more existential: the person with Alzheimer's is disappearing.  They are there in body, but their mind is going. That characterization is controversial and may be hard to embrace completely.  When we are in the presence of someone with even quite severe dementia, they have many of the core features they have had for decades; attitudes, accents, quirks of phrase, and facial expressions.  So although they may have very severe impairments, they can also seem like the same person they always were, but changed. So it may not be so clear they are "disappearing. "

From a philosophical point of view, whether people with progressively increasing dementia are actually disappearing will depend on our understanding of what makes people who they are: a history, a body, DNA, memories, personality, position in network of other people, or maybe a soul. There has been vigorous philosophical debate about these ideas and that debate is ongoing. Intellectually, we may be inclined to favor one view or another, but our experience of being with a loved one with Alzheimer's is not necessarily determined by our intellectual theories.  So the sense of loss a family member or close friend may be very different from that experienced when a person physically dies. Part of the difference is the confusion that arises in trying to make sense of whether the person is still fully there or not.

So the question of when grief on the part of family members of Alzheimer's victims is appropriate or normal isn't necessarily easy to answer.  The authors spell out 3 stages of grief: anguish, adaptation and acceptance.   The discussion in The Emotional Journey of the Alzheimer's Family spells out the difficulties in identifying when grief becomes dysfunctional, and identifies the risk factors for depression.  It's all useful, and plausible.  One might wonder whether there is enough evidence for readers to be confident that the model of grief being advocated is scientifically proven but some citations are provided.

Overall, this is an important contribution to the literature on Alzheimer's that should prove helpful both to psychotherapists and also to psychologically sophisticated readers who are seeking an understanding of the emotional dynamics in families that come with the disease.


© 2015 Christian Perring


Christian Perring, Professor of Philosophy, Dowling College, New York