17 MINUTE READ

From Luke’s Journal Nov 2024 | Vol.29 No.3 | Mental Health II

This article outlines a Christian theology of dementia and how this theology should underpin Christian health professionals’ engagement with people living with dementia. We will begin by briefly defining both dementia and a Christian theology of dementia, before focusing on praxis and communication, and finally listing an Alphabet of Dementia care for Christian Health professionals.

Understanding Dementia

Dementia is a medical term so we need to start with the medical understanding of dementia. First used in its modern meaning by Philippe Pinel in 1797, dementia is an umbrella term for a range of diseases which impact the brain (of which the most common is Alzheimer’s dementia). Please note that the definition refers to ‘brain’ and not ‘memory’ as, contrary to popular belief, dementia affects much more than memory and people can live with multiple kinds of dementia. Dementia is progressive and terminal, indeed it is the biggest killer of women in Australia today.¹ There is much diversity of dementia with a range of clinical presentations throughout the population. With the complexities of the disease and all the ongoing new research, we can be thankful that there are great resources about dementia available. I recommend browsing the Dementia Australia website² as a beginning and enrolling in the UTAS ‘Understanding Dementia’ MOOC³ (which is online and free for Australian citizens). These resources will equip you to understand the basics of the biomedical aspects of dementia, and thus better inform your practice as health practitioners.

A Theology of Dementia

While medicine defines the term ‘dementia’, a key question for Christian health care professionals remains: What does the Bible teach about dementia? Perhaps the two key questions in this context are:

• What is a human?
• How should we treat humans?

These questions are significant in our ‘hyper-cognitive’ culture where cognition is tied to personhood – ‘I think therefore I am’ (Descartes). This is not merely a theoretical concern, but a practical one as Australian Ethicist Peter Singer argues that dementia removes a person from being a human and makes euthanasia appropriate.

Scripture, by contrast, teaches that our cognition is a blessing from God, but does not impact our value before God or how we are treated by our fellow humans. Specifically, the doctrine of the Imago Dei, teaches that all humans are created in God’s image. So, Imago Dei means people, all people, are of immutable and incredible value. While all creation is a product of God’s word and the value and treatment of animals is significant, the value and the treatment of humans is in a different category as made us in His own likeness.

Therefore, the basic tenets of a Christian theology of dementia are:

1. People living with dementia are PEOPLE made in GOD’s image!
2. Christians are called to LOVE PEOPLE.

How can Christian medical professionals effectively love people living with dementia? 

So, what are the implications of the Biblical doctrine of personhood for people working in health care?

This is both incredibly simple (we need to love people living with dementia) and complex (how can we demonstrate this love for them?). Here are some great resources:

• Second Forgetting; Remembering the power of the Gospel during Alzheimer’s disease by Mast (a Christian medical doctor).

• Ministry with the Forgotten: Dementia through the Spiritual Lens by Carder.

• Keeping Love Alive as the Memories Fade; the 5 Love Languages and the Alzheimer’s Journey by Barr, Edward and Shaw.

However, people and particularly medical professionals are busy. So, the following section addresses the critical topic of communication. I have also provided an ABC of dementia care for Christian medical professionals at the end of this article.

Communication

Communication is a foundational aspect of enabling a person living with dementia to receive and understand love.  Dementia-friendly communication is, like other communication, a matter of what is ‘heard’ being much more important than what is ‘said’. I use inverted commas since communication is largely mediated by the five senses, which in turn are processed in the brain – and dementia affects the brain. So, I strongly recommend downloading the short and free “Dementia and Sensory Challenge: Dementia can be more than a memory” booklet which was written by people living with dementia.⁴ I also highly recommend engaging with Tepa Snow, a world expert in dementia communication who has produced YouTube videos, courses and books.⁵

My advice in terms of dementia communication for health professionals is:

• Rushed communication is rarely effective. This is particularly true in the midst of dementia, not simply because dementia can slow a person’s ability to understand and reply, but because a sense of limited time also increases people’s stress and can leave them feeling unloved.

• Speaking slowly, clearly and using pauses, not to mention body language (e.g. smiling, open body posture and orientating yourself to be at eye level) are all incredibly important in terms of dementia communication. Additionally, using curiosity and confirming a person’s understanding is critical.

• Time and space impact communication. For example, communication in a ward amidst the bustle of sensory inputs makes it hard for most people to focus. A quiet room, with comfortable chairs, or walking together is often more effective. Communicating with a person living with dementia is generally going to take longer than with a person without cognitive challenges – so consider booking a longer consultation. Finally, many people living with dementia are ‘better’ in the mornings and or may struggle with ‘sundowning’,⁶ so consider this timing in planning your visits with them, and be aware of this effect.

• Generally speaking, short concrete sentences are more powerful than long abstract ones. Also, remember the power of narrative. It was not accidental that much of Jesus’ communication involved stories to convey his messages.

• A particular challenge for health professionals is the twin traps of being patronising, or overly complex. Just as giving an answer about faith would rarely involve the phrase ‘penal substitutionary atonement’, please endeavour to translate medical jargon and to communicate in a way the person understands. Of course, this translation needs to be individualised to the person.

• People living with dementia and other serious health conditions, can and often do, experience and express strong and distressing emotions. Additionally, the disinhibition often seen in dementia may result in these strong emotions being expressed during a consultation, which can be potentially distressing for the health professional. Dealing with a patient’s strong emotions can at times be difficult, and in such situations, the ability to apply emotional first aid is important. It may be advantageous for health professionals to undertake some special training⁷ in this area, as this is often missing in undergraduate courses. Referral to other allied health colleagues is also wise.

• Consider appropriate touch. Touch brings risk of abuse and allegation of abuse, but it is also universally recognised that people need touch. A clinician’s touch is often crucial for diagnosis and treatment, but touch is also important as a way of expressing love. Again, all touch should be appropriate and consensual.

I am sure most, if not all this, is not new information. My hope is that it provides both a refresher and increases your confidence in interacting with people living with dementia, and with their loved ones.

ABC of Dementia care for Christian medical professionals

Analgesia – Living with dementia does not make a person immune from pain. Indeed, a common challenge is that people living with moderate to advanced dementia may struggle to verbally articulate their pain. Body language and the question of whether a person would be likely to be experiencing pain are critical to effective pain management.

Baulking – Dementia is not a popular area of healthcare, but people living with dementia are our neighbours and we are called to love them, not baulk at providing them with healthcare. We need health professionals who are going to specialise in geriatrics and dementia care, and for everyone involved in healthcare to understand how to help people living with dementia.

Consent – People living with dementia are people and thus consent is critical. Therefore, every effort should be made to inform the person and seek their consent. The level of consent will vary with the invasiveness of the interaction. For example, extending your hand for a handshake is asking for consent to a handshake and does not require a formal consent document, but open heart surgery does! If the person is unable to give consent, consent protocols identical to those of anyone else who is unable to consent should be followed. This may mean suggesting an Enduring Power of Attorney attend medical appointments so that simple procedures can be performed on the spot (e.g. freezing warts, dental fillings and vaccinations).

Detection – Diagnosing dementia, particularly in the early stages is challenging. People often present their best to medical staff, and fear of a dementia diagnosis means they may avoid raising it with medical personnel. Diagnosis is important, as early treatment can delay progression, provide support and appropriate services, but also for the ability to give consent. This may require significant time to be involved, express their wishes and plan for their care as the disease progresses.

Elder Abuse – Not everyone who is elderly will develop dementia, since people can develop dementia at any age. However, the biggest risk factor for dementia is older age. Additionally, dementia is a significant risk factor for elder abuse. Medical professionals need to be actively aware of Elder Abuse and their mandatory reporting responsibilities.⁸

Faith – Dementia is not a spiritual disease. Sadly, I have heard Christians link dementia to spirituality: ‘Dementia is a symptom of the demonic or lack of faith’. Lifestyle factors can increase the chances of a person developing dementia CTE (Chronic Traumatic Encephalopathy), which used to be called pugilistic⁹ dementia is related to repeated head trauma. Korsakoff Dementia is linked with excessive alcohol, and Vascular Dementia is linked to poor cardiovascular health. Dementia is generally, like cancer, primarily caused by living in a world broken by the fall. 

Grief – People living with dementia grieve and grief is good. Scripture records God grieving, Jesus wept when Lazarus died and the lament Psalms are full of grief. The challenge is not grief but how we grieve and how we love others in the midst of their grief – the short answer being – ‘weep with those who weep’. This includes not just the person living with dementia but also their loved ones.

Hospital – For most people being in hospital is distressing because of the health risks (e.g. infection) and because it’s a scary and unfamiliar space. This is particularly true for people living with dementia, many of whom find a break from routine traumatic. Therefore, a decision to send a person living with dementia to hospital should consider their medical need for hospital alongside the risks of moving them from a familiar environment.

Isolation – In the opening to this article I described dementia as an umbrella term for a disease of the brain – which is the accepted medical definition. However, an alternate definition is that dementia is a disease of social isolation, where society abandons the person living with dementia.¹⁰ Christians have a particular responsibility to love and not neglect their neighbours.

Jesus – We all need Jesus! People living with dementia often come into relationship with Him, as conversion is not primarily a cognitive process. I will be addressing conversion and spiritual care of people living with dementia more fully in an upcoming issue of Luke’s Journal. However, if you want to learn more now, I recommend Coming to Christ in Dementia by Mark Wormell.

Knowledge – Loving people living with dementia means growing our general knowledge about dementia, and also growing in our understanding of the individual who is living with dementia.

Language – Words are powerful, and medical professionals’ words carry additional weight. The language used around dementia (and growing older) in our society is often profoundly damaging, as it positions a person living with dementia as a lesser or even non-existent person. “Mum died twice”, “mindless empty shell” and “adventure before dementia” are demeaning. Another common word we need to remove from our vocabulary is ‘demented’ as this equates the disease with the person, we would rightly not describe someone with cancer as ‘cancered’ or ‘cancerous’. Even the word dementia with its perceived stigma is being challenged nowadays.²

Mental health – The prevalence of mental health conditions for people living with dementia is terrifying.¹¹ In particular, depression and anxiety are incredibly common and treatable so there is a massive space for health professionals to explore associated mental health conditions (these can even mimic dementia symptoms).

Naughty – Too often I hear medical personnel describe a person who is living with dementia as ‘naughty’. Yes, people living with dementia are people and therefore sinners, just like their medical professionals! However, often when I hear ‘naughty’ in the context of people living with dementia they are talking about challenging ‘behaviours’.¹² These are instead symptoms of their disease or unmet needs being expressed.

Oral health – Dementia is linked to a number of serious oral health issues.¹ We need dental practitioners, speech pathologists and dietitians willing to take time and patience to support those living with dementia to receive good oral care.

Palliative – with early diagnosis and treatments some dementias can be slowed. However, dementia is currently incurable and terminal. Therefore treatment should be palliative, in that they should focus on quality of life not cure.

Questions – As with the provision of any health care, asking questions is critical, not simply in terms of diagnosis and review of treatment, but in the use of person-centred questions such as, “What does Ben want?” and “Why is Ben….?”

Risperidone – The use and misuse of chemical restraint deserves a full article in itself. Basically, giving anyone any medication needs to be done carefully weighing indications, risks and benefits. Medication use, efficacy and side effects should be reviewed frequently, with the aim to use the lowest effective dose possible.

Sexuality – Biblical sexuality should be expressed within a marriage, and often people treat sexual activity by people living with dementia as aberrant or ‘dirty’. God created sex as a good part of His creation, and its pleasure is described in the Old Testament book The Song of Solomon. Loss of inhibition is a symptom of some dementias and families will need support around the distress that can be caused by this as well.

Time – People living with dementia need time, relationally and medically. Rushed communication with a person living with moderate or advanced dementia and/or with their carer is likely to be ineffective. Practically, this may mean booking longer appointments and deliberately speaking more slowly or re-explaining certain concepts and checking that they have been understood.

Urinary Tract Infections (UTIs) – A number of symptoms of dementia are also symptoms of other issues (e.g. UTIs, dehydration and depression). It is critical to rule out and treat delirium-inducing illnesses in people who are living with dementia.

VAD – Voluntary Assisted Dying is now legal in much of Australia and is a major challenge for many Christian health care professionals. Greater minds than mine have written extensively on this topic. As a chaplain, I simply want to encourage Christians in healthcare not to abandon people who have made decisions we disagree with and to continue to provide care within the carer’s moral boundaries.  It is also important to prioritise your own self-care in situations that you might find distressing or challenging.¹³

Wisdom – Living with dementia does not make a person aspiritual, and spiritual care must not be abusive. This requires wisdom, particularly with competing ethical considerations. This will be explored in more detail in an upcoming issue of Luke’s Journal.

X-rays – There is a temptation for medical staff and families to seek tests, scans and procedures to establish concrete diagnoses for a range of issues. It is important that this desire is weighed against the benefits of diagnosis, particularly if it will not impact the course of treatment.

You – We are blessed to live in a time of ground-breaking medicines, machines and medical treatment. However, to steal Roger Ailes line, “You Are the Message”.  Yes, people want the medical treatment you give but they want it from a person, from another human being who, like them, bears God’s image. Relationship and rapport are important aspects of effective healthcare.

Z – While ‘Z’ is the end of the dementia care alphabet, it is not the end of life. Much of this article has focused on the challenges and traumas of life with dementia. Yet, perhaps the most important message of “The ABC of Dementia for Medical Professionals” is that dementia is not the end. As Christians, we rightly know that, despite dementia being medically incurable, eternity with Jesus is our ultimate hope. Nevertheless, Christians are promised God’s love, indwelling and eternal hope in the now.

Now I know my ABCs. Next time won’t you keep loving me?

The concepts described within this Dementia Alphabet may not be new, but I do hope they encourage you to continue loving those living with dementia.

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References

1. https://www.aihw.gov.au/reports/life-expectancy-deaths/deaths-in-australia/contents/leading-causes-of-death
2. https://www.dementia.org.au/
3. https://www.utas.edu.au/wicking/understanding-dementia
4. https://dementiacanbemorethanmemory.wordpress.com/dementia-and-sensory-challenges-booklet/
5. https://teepasnow.com/
6. https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/symptoms/sundowning
7. I recommend the Older Persons Mental Health first aid course:
   https://www.mhfa.com.au/our-courses/adults-supporting-adults/older-person-mental-health-first-aid/
8. https://www.ag.gov.au/rights-and-protections/protecting-rights-older-australians
9. A reference to boxing.
10. Kinghorn, W. A. (2016). “I Am Still With You”: Dementia and the Christian Wayfarer. Journal of Religion, Spirituality & Aging, 28(1–2), 98–117. https://doi.org/10.1080/15528030.2015.1046633
11. Steller, B. (2023). Mindfulness meditation in residential aged care: what frail older people identified as beneficial for their spiritual care and well-being. Journal of Religion, Spirituality & Aging, 35(2), 193–208. https://doi.org/10.1080/15528030.2022.2068732, p. 193.
12. Even the language of ‘behaviours’ is hotly contested as much of what is deemed to be ‘behaviours’ is simply a person trying to fulfil an unmet need.
13. A great concise new resource on self-care is “Caregiving: Taking care of yourself while caring for someone else” by Debbie Barr