The Psychodynamics of Dementia (2/5): Living with Uncertainty

The language of uncertainty is used often in a palliative care context, particularly in relation to the experience of living with a terminal disease. Though a client with dementia might live for many years following the initial diagnosis, dementia is increasingly recognised as a long-term life-limiting condition.

The difference between dementia and other life-limiting conditions is that a person living with dementia will not be presented with the option of treatment plans, with a view either to cure, to slowing down or to controlling symptoms. Treatment possibilities for many terminally ill people represent a symbol of hope, or heroics, and an imagined future, albeit one punctuated by hospital appointments and sometimes gruelling interventions.

For someone with dementia, however, it will be made clear right from the outset that there is no cure and that there are only four available drugs to alleviate symptoms for one of the many types of dementia, Alzheimer’s disease. This may lead to a sense of despair, and the wish to give up. There is a danger of the person with dementia succumbing to an all-encompassing and heavy experience of anticipatory grief.

Alternatively, they may respond by maintaining a façade of strength in the face of uncertainty, which can lead to a sense of isolation and exclusion. Therapy can then be a space in which to talk about current losses, as well as fears around further future dispossessions, that the client might be hiding from family members.

A partner may also feel shut out, and rejected, leading to a tense and fraying relationship. So it can be helpful at this stage for a third party to be involved in some therapeutic sessions, if the person with dementia is consenting. This can provide a chance to talk about day-to-day living, and an opportunity to reassess where pleasure can be found in joint and individual experience as the changes brought by dementia mount.

Some sessions with a partner, or third party, might also offer scope for reflection about relational dynamics that predate the dementia. For instance, either party may experience an unease around being a caregiver or a recipient of care, possibly stemming from internalised childhood relational patterns.

In national UK dementia care policy, there is talk of ‘living well’ with dementia. Indeed many people in the early stages of dementia are able to contribute to family and social life, some bravely using their experience to inspire others. A therapeutic relationship in the lives of clients with dementia, though, can provide a very safe and facilitating environment in which the messier, untidy truths of the experience can be talked about: those days of ‘living unwell’ where it is a struggle to find the high street; the names of good friends; the sequential ordering of making a cup of tea.

A therapist, then, must be open to noticing and to attending to both the moments of continued joy in someone’s life – where it can be found and how it can be maintained – as well as the experiences in which a client fears they are coming undone. The work is not about creating false hope and reassurance, but rather sitting with the tension of pain and panic alongside the encounters in which someone is continuing to find value in the present moment of the everyday.