The largest cause of memory loss in Australia is dementia.
Dementia refers to the symptoms of a group of illnesses that cause the progressive degeneration of a person’s cognitive and physical abilities. The early signs are usually very subtle and may not be immediately evident. As a person ages, their behaviour may change for a different reasons; however, dementia is a result of neurological changes that manifest as frequent confusion, withdrawal, personality changes and gradual loss of memory, intellect, social skills and the ability to perform everyday tasks, which can become apparent in behaviours such as wandering, mood swings, aggression, hallucinations and depression. Typically, a person’s family will notice dementia symptoms three years prior to a formal diagnosis being made.1
In Australia, dementia is the greatest cause of disability in people aged 65 years or older.2 Alzheimer’s disease is the most common form of dementia, representing an estimated 50‒70% of all dementia cases. More than half the residents in government-subsidised aged care facilities in Australia have been diagnosed with dementia.3 In the United Kingdom, the Alzheimer’s Society reports this figure as 64%; one United States (US) study has found that 75% of nursing home residents experience some form of cognitive impairment.4 In Australia, approximately one person is diagnosed with dementia every six minutes5, with the number of diagnosed cases expected to increase by one-third in fewer than 10 years.
It is highly likely that every human will encounter memory loss and require memory support over the course of their lifetime, either personally or among their family or friends. This encounter will inevitably change the way an individual experiences the world, determines what is important and shapes how they choose to live.
We assert here that people are ‘soul beings’ first and physical beings second. Care services that ignore the soul risk treating those in their care as merely ‘biological garages where dysfunctional human parts are repaired or replaced’.6
Memory loss is a clinical challenge
The literature has now widely linked the speed of a dementia patient’s deterioration to the care regime of their environment.7 In their critical commentary of the literature, Baldwin and Capstick note the negative effect of inexperienced, overworked or overly task-oriented clinical staff on the cognitive decline of people with dementia.8 Bredin, Kitwood and Wattis have found that significant mental deterioration can be directly related to the organisational culture of nursing staff facing excessive pressures from management.9 In this case, staff learned to cope with their situation by depersonalising patients, with the result that some patients showed distress through increased problem behaviours, while others went into an almost complete vegetative withdrawal. Following interviews and observations conducted in Norway, Heggestad, Nortvedt and Slettebø have found that nursing home staff cam easily become so busy performing their jobs that they may focus on physical tasks rather than socially and relationally engaging with residents.10 This could be particularly applicable when resources are scarce, and patients’ biomedical or physiological needs are usually prioritised over their psychosocial needs. Heggestad, Nortvedt and Slettebø contrasted this task-centred care with person-centred care, where the whole person is treated with dignity and not as an object.
Memory loss is a spiritual challenge
Over the past few decades, a number of studies on dementia and spirituality have been published.11 Considerable literature supports the concept that both religion and spirituality play a significant role in effective healing and wellness.12 Religion and spirituality are linked, but not interchangeable. Spirituality seems to defy a universally accepted definition13, yet is mostly understood experientially as the intangible essence of a meaningful connection with God (or a higher being or purpose) in what Snyder and Lopez call ‘a search for the sacred’.14 Religion can usually be understood in terms of a belief system, set of doctrines, shared symbols and rituals15 associated with forms of organised practice within a religious organisation.
Clinically, the memory loss associated with dementia, intellectual delay or head trauma, raises challenging questions about an individual’s personhood.16 Despite growing understanding of the nature of dementia, pastoral practitioners are challenged by the realities of effective ministry practice. As Wallace says, ‘Meeting the spiritual needs of people with dementia is not an optional extra’.17 Chaplains, pastoral workers, ministers and priests are learning that as created beings, people are always ‘someone’ rather than ‘something’18, and not merely defined by their human psychomotor abilities. Some of the theological questions arising when focused on holistic care include:
- Does the disintegration of cognitive ability lead to a loss of self?
- Who am I when I have forgotten who I am?
- If my unique ‘personness’ relies on my pool of memories, does losing my memory mean that my ‘self’ has disappeared?
- Has dementia disintegrated my soul?
- As someone who is made in the image of God, how does God view me when I have forgotten who God is or who I am?
The follow-up questions, then, are theological in nature:
- What makes us who we are?
- When part of who we are has gone, does that change our relationship with our God?
- Is our relationship with God purely cognitive in the first place?
This challenge cuts profoundly to the heart of who we are as a Christian community. As CS Lewis noted in The Problem of Pain, ‘kindness without love leads to indifference, even contempt’, and we are surely called to something higher than kind tolerance. As Saunders writes, the ‘gentle neglect of people with dementia is not a worthy strategy for the church—and yet this is often the case in practice’.19
The great challenge for providers of care is to emphasise the whole person. This requires a culture of caring for the whole person, an emphasis on human flourishing that permeates every aspect of organisational life.