In this essay, I discuss the grief which follows an Alzheimer’s diagnosis and which changes, for the patient and the family, as the condition progresses.
Grief has two components. The first, and most easily recognised, is the loss and disruption of attachment to a loved one [1-3]. The second is Assumptive World Theory [4]. It’s less well known than attachment theories, yet it explains perfectly, for both the patient and those that care for them, the fear, anxiety, and grief that accompanies the Alzheimer’s diagnosis and ensuing story of its progression.
In simple terms, when life is going well, each of us lives in our personal, assumptive world of familiarity and security. It’s the world we can easily take for granted, even if we thankfully count our blessings. A sudden change to our lives, through accident, trauma, disease, or violence, disrupts our peace. It shatters our comfortable assumptions. We fear the change and we grieve for the loss of the comfortably familiar. Assumptive World Theory explains those aspects of Alzheimer’s grief which cannot be explained by Attachment Theory, although both are equally important. The gradual changes, punctuated by notably distressing events in the progression of Alzheimer’s disease, are exhausting for all concerned.
Malcolm (not his real name) is a friend I met in my mid-teens. Born just months apart, we had both passed scholarships to what in Britain are called Grammar Schools. We shared a passion for silly jokes and reflecting on our relationships with girls. Neither of us excelled at school, although after a bumpy career start, I eventually made it into teaching. Malcolm didn’t go to university but became a librarian in one of the world’s top University Libraries, where he happily spent his entire working life. I left my birth town in 1973 and Malcolm and I lost contact with each other for forty years. Then, in 2012, through social media, Malcolm used his library research skills to trace and reconnect to a network of old friends.
In 2016 Malcolm wrote to me, saying he had been diagnosed as having ‘mild dementia at present’. Everything appeared much the same in 2017, as he reminisced, in his Facebook posts and messages, about our teenage years. Then in 2018 his posts didn’t always make sense, and he would often post the same thing more than once. Apart from the occasional picture of seasonal get-togethers, added by his family, his posts have now ceased. I can only imagine Malcolm’s progressive grief as his wit and intellectual power has declined, and the grief of his wife and children in witnessing it. For both Malcolm and those close by who love him, their assumptive world has changed dramatically.
The changes which follow an Alzheimer’s diagnosis bring grief in their wake, as each family member mourns what is slowly being lost. Family holidays and days out take more thought and planning. Domestic arrangements and routines must change in sensible response to potential dangers in the home and garden. There are likely to be necessary but difficult conversations about what needs to change, not least when it might be wise to stop driving. Relationships change as the security of loving and being loved is progressively unbalanced. For the spouse in particular, the transition from lover to care-giver can be heart-breaking. For the children, a parent that was once nurturing and protective, is lost, and roles are reversed. It brings into stark relief the sad fact that Alzheimer’s grief is related as much to attachment as it is to the family’s assumptive world. Anticipatory grief enters the frame with the reluctant acceptance that this is a life-limiting condition. I frequently work with bereaved clients who have lost someone to a neurological condition, and who feel haunted by memories of changed personality, tantrums, and absence of affection, even to the point where they no longer recognise those that care about them. The bereaved have lost their loved one twice.
To summarise so far, the grief of Alzheimer’s involves assumptive world theory, loss of attachment and anticipatory grief. It affects the whole family, including the person with the diagnosis. We might reasonably expect that Alzheimer’s grief is similar to the grief which follows a bereavement. If that is the case, we might expect to see the stages of grief appear.
Most people are familiar with the Elisabeth Kübler-Ross stages of grief: denial, anger, bargaining, depression, and acceptance [5]. It is less well known that these were written to describe the stages of grief following a life-limiting diagnosis, rather than a bereavement. Neither is it well known that she coined these stages after she met Colin Murray Parkes, who had already published a similar Model with John Bowlby [6]. The Bowlby and Parkes model [7] has four stages: 1. Shock, numbness & denial, 2. Yearning, searching and protest, 3. Disorganisation and despair, 4. Reorganisation and recovery. My own research [8] has confirmed the uniqueness of grief and the futility of trying to fit grief into a neatly linear stage model. Nevertheless, grief appears to me to go through a process which fits closer with the Bowlby & Parkes model than the Kübler-Ross stages. The clients I have worked with over 21 years show a typical pattern. Soon after the loss, they tend to dissociate from the reality. It’s a numb phase which one could arguably label ‘denial’. It may also serve to protect us from a reality that is too painful to accept in one sudden rush. Dissociation is followed by the pain of reality, interspersed with days that are more bearable, but often the swing between the two moods is outside of the griever’s control. This period of disorganisation is exhausting, and there really is no telling how long it will last. Gradually, for most people, the easier times happen more often, and the tearful episodes become less frequent and of shorter duration, although some events can still trigger tears long after the loss, and perhaps for a lifetime. Personally, and professionally, I would argue that ‘recovery’ is an unhelpful concept. We can adapt by reorganising our life and relearning to live in a changed world, but we never recover from painful and traumatic loss.
Would we expect a similar pattern in Alzheimer’s grief, that is, denial, followed by pain and disorganisation, followed by adaptation, and learning to manage? Is that the experience of families affected by the disease, including the newly diagnosed family member? In 2013 at a conference in Oxford, England [9], I shared a conference platform with Professor Richard Cheston[10]. Richard, a consultant clinical psychologist, has worked with dementia for many years, and is Professor of Dementia Research at the University of the West of England in Bristol. He has published over 50 journal articles and two books. Richard and his colleagues run support groups for people newly diagnosed with Alzheimer’s. At the conference he reported the story of ‘Robert’, a 76 years-old retired solicitor, who at first dissociated from his diagnosis, but over the duration of the group meetings, came to accept the reality [11]. With accepting the reality, comes fear, anxiety, and a risk of depression[1], as much for the immediate family as for the person with dementia. Just as with grief following bereavement, a period of dissociation from the reality for all concerned, may serve a useful function in allowing the family to assimilate the diagnosis and its far-reaching implications. The time comes however, when it is important to face the reality and to talk openly and honestly. This allows the family to share feelings of anticipatory grief, as well as the trauma of watching the progress of the disease in someone they love. As a counsellor I know that families bereaved from a neurological condition are often traumatised by the personality changes they have witnessed in a much-loved spouse or parent.
Families that are open with each other and to professionals outside of their world, cope much better with adversity than families who shut themselves off from help, and who hide their thoughts and feelings from each other and those around them. Part of a counsellor’s job is to encourage difficult conversations [12]. Some families may even benefit from seeing a family therapist, who can facilitate difficult conversations. I would urge all families, open or otherwise, to read Dr Jane Mullin’s excellent book Finding The Light In Dementia [13]. This optimistic title perfectly encapsulates Jane’s compassionate practical advice, written from a wealth of experience in the field. My own book The Plain Guide to Grief, [14] explains what to expect from a typical grief journey, be it from bereavement, a life changing illness or any other loss [14]. I believe passionately that one of the best ways to understand your own experience is to read the stories of others. Jean Lee’s compelling account of her parent’s dementia, Alzheimer’s Daughter [15], is beautifully written and very moving, I recommend it to all families coming to terms with a new diagnosis.
I hope that this brief essay will help explain the feelings which accompany a diagnosis of dementia. I am not an expert in Alzheimer’s disease; my field is loss and grief. I have worked with many people who have lost a loved one to Alzheimer’s and I understand the sense of losing your loved one twice over. I also understand, personally and professionally, the experience of a potentially life-limiting diagnosis. There are no quick fixes to grief, and everyone’s experience is unique, but I find explanations and stories help my clients, so I hope that this helps you too.
References
1. Bowlby, J., Attachment and Loss: Volume 2 Separation: Anger and Anxiety. 1975, London: Pimlico.
2. Bowlby, J., Attachment and Loss: Volume 1 Attachment. 1969, London: Pimlico.
3. Bowlby, J., Attachment and Loss: Volume 3 Loss: Sadness and Depression. 1980, London: Pimlico.
4. Parkes, C.M., Psychosocial transitions: a field for study. Social Science and Medicine, 1971. 5: p. 101-115.
5. Kubler-Ross, E., On death and dying. 1969, Toronto: MacMillan.
6. Parkes, C.M., Elisabeth Kübler-Ross, On death and dying: a reappraisal. Mortality, 2013. 18(1): p. 94-97.
7. Bowlby, J. and C.M. Parkes, Separation and loss within the family, in The child and his family, E.J. Anthony and C. Koupernik, Editors. 1970, Wiley: New York. p. 197-216.
8. Wilson, J., Moments of Assimilation and Accommodation in the Bereavement Counselling Process, in York St John University School of Psychological and Social Sciences. 2017, Leeds: White Rose eTheses Online.
9. Wilson, J., Assimilation of grief experiences following spousal bereavement, in Society for Psychotherapy Research UK & European Chapters 4th joint conference, W.B. Stiles, Editor. 2017, SPR: Oxford.
10. Cheston, R., Dementia and existential threat: negotiating the fear of a loss of control in Society for Psychotherapy Research UK & European Chapters 4th joint conference, W.B. Stiles, Editor. 2017, SPR: Oxford.
11. Watkins, R., et al., ‘Coming out’with Alzheimer’s disease: Changes in awareness during a psychotherapy group for people with dementia. Aging and Mental Health, 2006. 10(2): p. 166-176.
12. Wilson, J., Supporting People through Loss and Grief: An Introduction for Counsellors and other Caring Practitioners. 2014, London: Jessica Kingsley.
13. Mullins, J.M., Finding The Light In Dementia: A Guide for Families, Friends and Caregivers. 2017, Cardiff, Duetcare Publishing.
14. Wilson, J., The Plain Guide to Grief. 2020, London: Book ISBN. 211.
15. Lee, J., Alzheimer’s Daughter. 2014, CreateSpace: North Charleston, South Carolina.
[1] Depression and grief show themselves in similar ways, but depression is an unremitting low mood, whereas grief comes in waves, with periods of respite between them.