Recently I spoke to the women at my church and their guests about my work at HammondCare, an independent Christian charity providing aged care, community care, health and hospitals. My particular work is to engage people through music, especially in residential care, and especially people living with dementia. In this article, I do not want to focus on music but rather on the challenge of maintaining personhood and dignity throughout dementia. Most of us will find ourselves in a role of carer, spouse, child, or friend of someone living with dementia in the community or in residential care at some time in our lives. As Josie Gagliano says in her book, The Australian Ageing Generation Handbook (Ventura Press, 2014), this responsibility can sometimes arise suddenly when we are ill prepared. The majority of services, advice, helplines and care professionals focus on the physical, medical and allied health needs of people with dementia. This is obviously vital, however I want to discuss the nuanced and sometimes challenging areas of spiritual wellness, personhood and the slippery concept of quality of life.
Most of us are quick to agree that happiness, quality of life, and belonging, are as important as physiological needs in older age, dementia or any disability that is isolating and marginalizing. Indeed, whole-person wellness is thought to impact physical health and people with a positive outlook, feeling of identity, meaning and inclusion in their lives often seem to fare better than those with anxieties, agitation, mental health issues or low self-esteem, idleness and loneliness. Furthermore, our efficiency in medicalising the process of dementia diagnosis exacerbates the problem of seeing the illness, instead of the person, of seeing a person’s limitations or changes rather than enjoying the moment and positive ageing by nurturing abilities, personality, individuality and enabling people.
What are some of the key reasons that personhood can be diminished in dementia? Firstly, dementia is a cognitive disorder that causes changes over time and may mean that a person is no long ‘good at’ what they once were, or needs assistance with aspects of their life that they used to control. Secondly, our postmodern Enlightenment culture prioritises cognitive capacity and productivity or utility more highly than ever before, and Western culture possibly more than other cultures that maintain a healthy reverence and respect for elders, seniors and wisdom of experience. Thirdly, dementia has been called a disease of identity and in some ways erodes personhood when someone can no longer remember the people and events or skills that have been important to them, when a person can no longer recognize and remember their friends and relatives who want to help them, or when they can no longer think about, read and participate in communities that formed part of their spiritual and social life (see Donna Cohen’s book, The Loss of Self, Norton, 2002). There is no question that this is both confronting and challenging for family members but it is precisely the time in life when the person living with dementia most needs their carer, family and community, including church community, to step up and keep their story, narrative, preferences, passions, interests and importance alive. As a person with dementia gradually stops telling their own story, it is beholden on their community and loved ones to tell their story, to sustain their voice and presence.
The relationship with God changes, too. Transitioning from a role in which we ‘remember’ God through Bible reading, attending church, singing hymns of praise and worship, renewing our commitment and devotion to God, the church community and pastoral supporters may need to start reassuring someone of God’s love: that He never lets go of His saints. The church community can bring prayer, or music, or fellowship, and companionship to the person living with dementia.
The fear is not so much apostasy as perhaps ‘forgetting God’ or losing the sense of adoption, communion, and cognizance of forgiveness and salvation. We take our cue from Jesus who showed, by example, the ethics of equity and compassion, and also he dignified the poor, the disabled, and the marginalized, without prejudice or stigma, with the love of the Father, Son and Spirit. It is the Spirit who enables us to cry ‘Abba’, ‘Father’. It is the omnipresence and indwelling of the Spirit and reassurance of God’s steadfast love, irrespective of circumstance, that people with dementia may need to hear reinforced. Music and stories can be good ways of triggering reminiscence and memories of that assurance and feeling of belonging to the community of the Universal Church. As eyesight or language decline, people may no longer read and apprehend the Word through text, but music, touch, simple companionship and enjoying the moment together can become a more appropriate kind of Christian fellowship.
The idea that a person’s worth is linked to what they can do, or what they can do for another, is theologically incorrect, taking its cue from a modern economical model that commodifies relationships as transactional, namely an attitude that invests in a relationship for outcome, gain or benefit and satisfaction. This is fundamentally unChristian to marginalize people whose worth is not commodifiable according to the worldly paradigm. This kind of exploitative, utilitarian relationship obviously benefits the affluent, influential, highly skilled, and economically savvy and penalizes people whose contribution may be less commodifiable, such as ‘parent’, elder, with experience and wisdom, or those with a legacy of financial or active contribution that lies in the past. Personhood requires that we reinstate value, worth, meaning and purpose as attributes of belonging to God, of being Godly creatures, adoptees, members of the Body that is the Church.
The hope of salvation may take on a higher level of importance towards the end of a person’s life. Dementia currently affects around 332,000 Australians and that number is expected to reach approximately 900,000 by 2050. Dementia is an umbrella term that covers many different conditions, of which Alzheimer’s disease and Vascular Dementia are the most ubiquitous. In other words, nearly everyone is affected by dementia in some way – as the person with dementia, a carer, a relative, or a friend. The certitude of peace with God, forgiveness and salvation, are a frequently sources of concern for Christian family and friends.
Within Christian communities, especially those in need or who are marginalised, are foundational to the remit of the Christian church, and to nurturing the wholeness and inclusiveness of the community. When a person living with dementia outlives their spouse, has no close family or perhaps is single or childless and living at home in the community, increasingly we are seeing people with dementia who are isolated and extremely lonely, even depressed. I will write in a separate article about connecting and relating through music, however, broadly-speaking, providing companionship, helping with small tasks, and ensuring that people are included in their spiritual community is something that I believe churches can do better without needing specialist knowledge.
It is worth thinking about the loss for the carer, too, who is often worrying about the person with dementia and lamenting the loss of the person they used to be. This is a very natural and raw human response. The carer, family and friends, too, need reassurance that their relative with dementia is not lost or forgotten by God and that their salvation is solid even if mental awareness seems to fade. One of the most thorough Christian books on the dementia experience is by John Swinton (Dementia: Living in the Memories of God, Eerdmans, 2012). Swinton reminds us that the Holy Spirit works in the person with dementia in ways we cannot know (the Mystery). Yet, comfort can be found in God’s unchanging love (that does not abandon us): Not death, life, loneliness, dementia, forgetfulness, anxiety, confusion, wordlessness,
“nor anything else in all creation will be able to separate us from the love of God that is in Christ Jesus our Lord” (Romans 8:38-39 NIV).
Not even cognitive impairment, or memory loss and diminution of personal awareness, reduces God’s love revealed in the sacrifice of His son, Jesus Christ. For the person with dementia and their carer, ‘living in the moment’, enjoying the present and the time available, are ways to appreciate and live, rather than to grieve time or memories lost.
Christianity helps us understand a whole person and view people made in the image of God, with bestowed worth due to who they are (mother, father, spouse for example) and who they have been (remembered contributions, qualities, values, talents, skills worth), valuable in His creation – a mimesis of God Himself in some degree (Imago Dei), and designed by Him with lifespan, life experiences, and life challenges in His control, part of God’s immutable greater plan) – and a person with equal opportunities, rights, will and dignity to other human creatures.
There is a special intimacy, faithfulness, and steadfastness (to be found in the relationship with God) when family and friends may be deterred by the realities of sickness and suffering (Psalm 38:11) or an individual may feel lost and deserted, and seeks to be heard, recognised, and acknowledged by God.
I will be your God throughout your lifetime – until your hair is white with age. I made you, and I will care for you. I will carry you along and save you. (Isaiah 46:4 NLT).
Theologically, we know that all have sinned and fall short of the glory of God (Romans 3:23) and therefore we are all equal in deserving Divine Judgement but all who believe in His name are also equally justified, atoned and sanctified. God keeps hold of His faithful.
I give them eternal life, and they shall never perish; no one will snatch them out of my hand. My Father, who has given them to me, is greater than all; no one can snatch them out of my Father’s hand. I and the Father are one. (John 10:28-30).
We are given personal identity by God (Psalm 139). We have bestowed worth by being His creatures, made in His image, and living in His Creation, irrespective of our creaturely limitations. Calvin related knowledge of God to the appreciation of our dependency, contingency and location within God. While, on the one hand, there is reliance on proclaiming the name of Jesus or testing and reasoning about God (Romans 10:10 & 12:2), on the other hand, Christianity challenges the epistemology and scripts of the world. Salvation comes through brokenness, strength comes through weakness, and gentleness is an ontological aspect of the Messiah Who is God, Christ incarnate (Swinton). Furthermore, intellect and human wisdom are perceived as barriers rather than as aids to faith (1 Corinthians 3:19).
Karl Barth, the influential modern Reformed theologian, is often associated with intellectualism and Biblical exegesis, yet he posits that “God is known as God acts,” that is, through encounter and experience, evident in acts and actions. We live in a hyper-cognitive culture that has been seduced by the (false) idea that personhood is inseparable from intelligence, reasoning and thinking, rather than stemming from our relationship to God. God is a person and His revelation of Himself is human and relational: fundamentally, to love and to be loved. “The incarnation, cross, and resurrection of Jesus indicate strongly that God is deeply implicated in both the suffering and the joy of human existence in the world” (Swinton).
A step towards upholding the personhood of those living with dementia is to recognize and think of people in terms of God’s unconditional love and gift.
Dr. Kirsty Beilharz is a composer and Director of Music Engagement in the Dementia Centre, HammondCare. She spent many years in tertiary education and research. She is currently working on a Ph.D in Trinitarian metaphysics. Find here website here.