The Spirited Project: Support for families and friends offering spiritual care to people living with dementia

This article is re-published with permission. It was originally published in the Spring 2021 issue of Zadok Perspectives (n. 152).

By Darrell Jackson and Titus Olorunnisola

The spiritual care of people living with dementia has been a preoccupation since May 2021 for the authors of this article and two colleagues from the University of Divinity – Professor René Erwich and Associate Professor Eleanor Flynn. In early July our ‘Spirited Project’ team was awarded a $140,000 research grant to investigate how better to equip families and friends to offer spiritual care to people living with dementia.

As news of our project circulated, we were approached by colleagues and friends who had relatives living with dementia. Whilst supportive of our project, they shared their experiences of feeling overwhelmed at the prospect of offering spiritual care to their friends or relatives living with dementia. It is precisely this aspect of providing spiritual care for people living with dementia that we are investigating in Australia and the UK, in residential aged care and home care situations.

In both countries, aged care providers are gaining new appreciation for the value of spiritual care being offered through a network of individuals familiar to the person living with dementia. However, understanding how friends and relatives respond when they are invited to offer spiritual care to loved ones is under-researched.

Whilst our work at this stage is still investigative, we are confident that it will improve the support for relatives and friends experiencing feelings of anxiety or reluctance about, or who lack confidence or competence in, offering spiritual care to somebody living with dementia. This article, informed by our initial research, outlines various factors in offering such spiritual care and concludes by suggesting ways in which voluntary carers might be better supported.

People living with dementia

Dementia is a disease commonly associated with old age and decreasing brain capacity. The Alzheimer’s Association of Australia estimates there are currently 342,000 people living with dementia in this country. Furthermore, the Australian Institute of Health and Welfare estimates that 15 per cent of our population currently aged 65 will live a further 25 years. This will increase the ageing population by a further 3.8 million people. Combined, these estimates make it likely that there will be over 400,000 people living with dementia by the end of the 2020s. Our research team believes that building greater levels of confidence and satisfaction for older people living with dementia is an expression of our pastoral and spiritual care as members of Christian communities.

In addressing the quality of aged care provision, the Commonwealth Government’s Royal Commission into Aged Care Quality and Safety (2021) recommends that care plan design and delivery should be holistic (i.e., include spiritual care) and should involve the person living with dementia, their families and their caregivers. Similarly, using recent clinical and social studies, our research suggests that an effective personalised structure of dementia care requires a partnership between families, voluntary caregivers and aged care providers. The Spirited Project is designing an action research project that will learn how best to support family members and voluntary caregivers as they consider education programs that offer spiritual care to a friend or family member living with dementia.

Spiritual care to people living with dementia

Spiritual care is the provision of a specific intervention or therapy to support another person’s spirituality. It does not assume a person necessarily has religious faith, but studies suggest that spirituality underlies, for example, the towards-death embrace of the relational, psycho- social, existential and, in some instances, religious elements of a person’s life. Spiritual care, therefore, is a critical aspect of a holistic dementia care plan. Studies suggest that persons with early-stage dementia can articulate spiritual desires, including the desire to inject meaning into past experiences, the desire to turn back time and the determination to rely on faith-based resources as their dementia progresses. They also suggest that nearly everyone living with dementia will exhibit some of these spiritual desires at one point or another.

Broadly speaking, we consider spirituality to involve practices, orientations and convictions that enable a person to develop self-awareness, connection to self and others and a sense of ultimate meaning and purpose. While expressions of spirituality might be very different for each person, incorporating spiritual care into the care of a person with dementia is not an optional extra.

Well-designed and person-centred spiritual care programs have the potential to enhance the wellbeing of persons living with dementia. Spiritual reminiscence, personal connection to nature and animals, spiritual self-awareness, connection to sacred places or objects, and cultural preferences all occupy a vital place in the development of a spiritual care plan. Understood in this way, spiritual care serves as a uniting factor for the physical, emotional and psycho-social components of a care plan.

Importantly, whilst spiritual care programs and activities might be designed to facilitate inner peace, courage, assurance and stability, it cannot be assumed, therefore, that the same feelings will be experienced by relatives and friends invited to be a part of the spiritual care for people living with dementia.

Families and faith community as resource for spiritual care

Among the social, cultural, family and religious networks of a person receiving spiritual care, there will be friends and relatives who carry the most extensive pre-dementia knowledge and experience of that person. There is a growing acceptance that friends and families – including partners, children and grandchildren – should be a significant source of information in the planning and implementation of spiritual care.

One of the most common ways a person expresses their spirituality is participation in a faith community or a community of conviction. Where this occurs in a pre-dementia stage, an older person’s religion may be a cherished personal experience that has helped them to navigate life’s demands. This is one area in which relatives and friends of persons living with dementia can be a significant resource for spiritual caregiving.

Faith communities can design and offer person-centred rituals that are responsive to the spiritual desire of dementia care recipients. These can promote inner peace, well-being, quality of life and connection to the divine, for example.

Spiritual care resources

A recurring theme that emerges in previous research is the extent to which holistic and effective spiritual care involves all the senses. Touch, smell, music, sight, movement and sounds become necessary alternatives for words as, gradually, the cognitive functions of the brain diminish. For example, tools such as Spiritual Reminiscence therapy can encourage participation, communication and reflection, relying on ‘triggers’ of residual neural capacity in response to multi-sensory rituals. Life Story approaches have also been shown to enhance connection, communication and religious participation by building on the ‘enduring capabilities’ of the person living with dementia.

The development of spiritual care practices has led to varying approaches that can be broadly divided into interventionist practices and those that are best described as therapeutic. Interventionist approaches normally anticipate an outcome such as the recollection of an earlier religious experience or memory. In some cases, a zealous relative or religious professional might press for a late-stage conversion. Sometimes these can be harmful or painful experiences. Therapeutic approaches place the emphasis on caring for and improving the wellbeing of the person living with dementia.

There are other approaches, such as group and relational activities, that can inform the provision of liturgically shaped forms of spiritual care. The familiarity of liturgy, routine non-verbal worship and multi-sensory prayer as components of spiritual therapy can shape occasions to celebrate life, stimulate joy, reduce depression over illness, promote the search for meaning and connectedness, encourage forgiveness or resolution of the past and encourage acceptance, hopefulness, dignity and value. Well-designed spiritual care practices are crucial in fostering a sense of transcendence, the divine and connection to religious beliefs.

However, despite the widely reported use of multi-sensory, non-cognitive approaches, they are less frequently researched than one might expect. We need repeated, long-term research to measure the ‘affect’, ‘impact’ and ‘engagement’ that result from multi-sensory approaches.

It is understandable – and human – that cognitive, rational carers feel frustration with the apparent non- responsiveness or non-communication of dementia sufferers, and our research seeks to take this seriously. Our research asks how we can better equip carers to acknowledge, understand and manage their frustrations and fears when asked to use spiritual care resources.

Theologically, this might lead us to ponder the value of mystery and grace – which  are  characteristic  of those Christian traditions that value sensory worship and liturgy, such as High Anglicanism, Catholicism and Eastern Orthodoxy – as we prepare families and friends to offer spiritual care where communication requires more than words.

Improving spiritual care training for family and friends

‘Where do I begin?’ is precisely the question our research team needs to hear. Families and friends who offer care of any kind to people living with dementia frequently experience emotional strain, social isolation, depression and feelings of being overburdened. The skills and personal qualities required for effective spiritual care

extend well beyond the professional development of paid carers. Spiritually self-aware individual carers, employed or voluntary, arguably have a distinct advantage

in offering spiritual care. However, the skills and characteristics that might transform a fearful, anxious, depressed, bewildered relative or friend into an effective spiritual carer of people living with dementia are largely under-researched. Our research team  believes  these skills and characteristics must first be identified and then incorporated into the preparation of relatives and friends being equipped as spiritual carers. There are certainly some things to be learnt from the training offered to aged care chaplains, including the capacity to deal with crises; learning to use technological developments; developing multi-faith confidence; and increased professionalisation in training for spiritual care. However, a relative or friend who offers spiritual care needs recognition in distinct ways. Firstly, their spiritual care emerges from a unique context. Secondly, they play a distinct role in the holistic spiritual care offered to a person living with dementia.

We believe that spiritual care for people living with dementia should be person-centred. This means we highly value the skills, hobbies and personal interests of relatives and friends as potential ways to show spiritual care. Sacred, multi-sensory rituals involving art, music, craftwork, storytelling, godly play, religious artefacts and spiritual practices, celebrated and facilitated by skilled relatives and friends, promise much for the spiritual care of people living with dementia. By the end of 2022 we hope to have a much clearer sense of what this might mean and how we can offer better support for those providing spiritual care to people living with dementia across Australia and beyond.

Darrell Jackson is an Associate Professor and the Director of Research at Whitley College, University of Divinity, Melbourne. An ordained British Baptist minister, he has held mission-related research positions in the UK, Hungary and Australia

Titus Olorunnisola is the Research Project Officer at Whitley College and the CEO of the Action Research Centre, Melbourne. Nigerian-born, Titus has degrees from universities in Nigeria, the Netherlands and Australia