The Psychodynamics of Dementia (1/5): Receiving a Diagnosis
There are limited talking therapy services for people with dementia. Yet psychotherapists can play an important role at every stage as this progressive condition unfolds. To mark the start of Alzheimer’s Month in September, psychotherapist and author Dr Esther Ramsay-Jones begins a five-part blog series on working psychodynamically in dementia care – beginning with the feelings that may attend a diagnosis.
Over the next five weeks, I will be drawing on my hands-on experience of having worked as a carer to highlight the value of a psychodynamic approach in supporting people with dementia and their family members. Following the trajectory of the condition, in coming weeks we will be looking at living with uncertainty, supporting family carers, bereavement support for people with dementia, and nursing and palliative care experiences. Today, I want to focus on the experience of receiving a diagnosis.
Many months of worry – an awareness that short-term memories are hazy, that objects are not in their rightful places, that words are evasive – may precede a formal diagnosis of dementia. Even though a client might have had a sense that a momentous change is taking place, such news is very difficult to assimilate.
Following what may be a dislocating battery of tests assessing a client’s cognitive ability, the finality of a diagnosis might bring relief to some, as something imagined at last becomes known, at least in name. For others, a diagnosis of dementia will provoke a wide range of powerful feeling states. People will often experience moments of denial, anger, anxiety, depression and confusion; some, a deep sense of falling apart. Clients might turn anger in on themselves, chastising themselves for not having lived a healthier, stress-free life. Dementia does not discriminate and there is no obvious causality to speak of. Yet the diagnosis of a long-term condition can become an all-encompassing persecutory object tied up sometimes with a critical, scornful inner voice. With great sensitivity and attunement, a therapist can work with a client to think about the specific meaning of the diagnosis for him personally.
For those whose attachment patterns may have been imbued with anxiety or ambivalence at an early age, there may be a fear that partners will abandon them now that they are no longer useful. There may be shame associated with dementia. A once extrovert person might withdraw as it dawns on him that, in time, he will need to depend on others around him, reawakening fears of earlier dependencies. In these instances, offering reflective space to family members can lead to greater levels of compassion.
Given the intensity of feeling that a diagnosis of dementia may stir up, it is possible that the person with dementia may be disinclined to ask for any form of counselling. However, talking therapy has been shown to reduce levels of anxiety and depression in people with dementia, as it can do with anyone in receipt of a terminal diagnosis.
That said, dementia – as it progresses – can be unique in terms of its impact on semantic memory and the capacity to process language, which may explain the dearth of talking therapy services for people with dementia. In the early stages of dementia, though, a person is likely to have a strong sense of self with minimal cognitive difficulty: a therapist will need to hold in mind both anxieties about decline and deterioration, and the continued desire for agency, autonomy and independence.
It is vital to enable clients to participate as fully as possible in the therapeutic relationship, during all phases, although the therapist’s creativity and intuition may become more important tools over time. Following a diagnosis, people will want to discuss the enormity of change: the dislocation of losing one’s historic role within a family; a desire to plan for the future; much-needed tricky conversations; salient memories across the lifecourse. Psychotherapy will provide a space in which the rush of anxiety can be articulated, where continued meaning in a person’s life can be considered. Often the therapeutic work will enable the client to bridge the gap between what is in his mind and what he wishes to share with family members.
I have found that the needs of someone with dementia are far-reaching and enduring. A longer-term psychotherapeutic approach is thus beneficial: a therapist may become a keeper of her client’s memories; vital when the gaps in a client’s narrative increase over time.