Dementia… Forgetting or Forgotten?

Discussions on dementia are rightly becoming more frequent. It is a pertinent topic, and one which deserves careful theological and pastoral reflection. Someone wonderfully qualified to do this is Kerryn Monger, a graduate of Vose Seminary, currently studying a master’s degree in Ageing and Pastoral Studies at Charles Sturt University. She is a chaplain in residential aged care with Bethanie with a passion for ministry with seniors. I am grateful to her for this excellent article written specifically for this blog.

I have wonderful memories of exciting times spent with my grandmother as a child. My grandfather was a dairy farmer, and Grandma operated a mobile hairdressing business in rural Victoria. She was also active in the community and in the church, serving on committees at local, regional and state level. She was always busy, and I loved to accompany her as Lizzie (her Holden) took her to farmhouses round the district with Bertha (her hairdryer) in the back. Grandma was a great cook and housekeeper, a competent businesswoman, an avid reader and occasional thespian. Her rendition of Archie Campbell’s Rindercella is still a vivid and very funny memory!

My lively, clever grandmother spent the final years of her life in a nursing home due to Alzheimer’s Disease. In the last months, she was unable to walk or feed herself or communicate with the people closest to her. This is the difficult, heart-breaking prospect currently facing people diagnosed with any illness that causes dementia. These are terminal illnesses, with no known cure.

Although dementia is ultimately fatal, there are often many years between diagnosis and death. Western cultures characterise these years as a living death, and exclusion from society starts immediately. “She’s not the person she used to be. It’s like we’ve already lost her.” “I want to remember him the way he was.” Statements like these are made about people who are still living, but living with a diagnosis of dementia. In the first century people with leprosy were relegated to the margins of society; in the twenty first century, people with dementia feel similarly marginalised and excluded from society.

I dream that our churches could be places where people living with dementia could find a welcome and acceptance. Even though society tells them they are only a burden on the taxpayer, it is my dream that within their church community they would be able to participate and make a contribution. Within this community, they feel valued. That is my dream, but I also believe it is essential to who we are as Christ’s church. The church cannot say to any part of Christ’s body, “We don’t need you!” “On the contrary”, says Paul, “Those parts of the body that seem to be weaker are indispensable, and the parts that we think are less honourable we treat with special honour” (1 Cor 12:22-23). People with dementia belong to the body of Christ, and are indispensable to the life of the church.

Living with dementia

Dementia is a general term for the symptoms of progressive cognitive impairment associated with a range of illnesses and brain injuries. There is a common assumption that people with dementia are incompetent; they cannot do anything for themselves. That may be true of the final stages of disease, but initially the brain injury impacts just a few functions.  One person may recall their family history and events from the past in great detail, yet be unable to remember what they had for lunch.  Another may hold an intelligent conversation, yet get lost on the way home from the local shops. Dementia mostly progresses slowly, almost imperceptibly and the early signs can be overlooked. “Everyone forgets names sometimes; that’s not dementia. I’m just preoccupied at the moment.” “Of course I know the way home; I was distracted.” “You must expect me to forget things sometimes; I am getting older you know.” Any other explanation is preferable to the possibility of dementia because of the stigma associated with that diagnosis.

People living with dementia need help to do some of the things they used to do. Other tasks are still possible but require greater effort and concentration, and may not be performed to the same standard as before.  Dementia changes the way the brain perceives the world so that familiar objects, places and people become unfamiliar and everyday tasks become more difficult. Even though they may not be able to do the same things they used to, people with dementia can nevertheless make a contribution to their community. Christine Bryden is one person who has made a unique and valuable contribution to society after her diagnosis with early onset dementia at just 46. She was no longer able to continue her work as a biochemist and government adviser, but since retiring for health reasons she has completed a graduate diploma and written several books giving insight into life with dementia. She needs help to manage her daily life, but she has won national and international recognition as a speaker and advocate for people with dementia. Christine’s website http://www.christinebryden.com/, and the Australian Story documentary http://www.abc.net.au/austory/specials/forgetmenot/default.htm detail more of her story.

The brain injuries that cause dementia are irreversible, but the disability associated with dementia can be exacerbated or reduced by situations and circumstances. Environmental changes can dramatically reduce perception problems. For example, coloured crockery can make meals easier and labels can help with identifying the contents of cupboards and drawers. Friends and families can incorporate clues to aid memory into their conversation.  We would readily greet a visually impaired parent, “Hi Mum. It’s Suzie” rather than assuming that hearing our voice was sufficient identification. Someone with dementia needs similar assistance but often they do not receive it.  Rather they are excluded when they can no longer keep up with the conversation. While we are becoming increasingly familiar with the adaptations required for many other disabilities, we are less inclined to make allowances for people with dementia. When environmental and social adaptations are provided, the resulting improvement in functioning can be so dramatic that some experts have called it ‘rementia’.

Thinking about dementia theologically

Dementia challenges how we think as well as our actions. The way we respond to people with dementia is a reflection of our understanding of God, ourselves and the world. When we exclude them, we look at them in the same way the Pharisee looked at the tax collector. “God, I thank you that I am not like other people – robbers, evildoers, adulterers – or even like this tax collector” (Luke 18:9). We are implying that they are not like us, perhaps because our greatest fear is becoming like them. “I’d rather die than live that way. Just shoot me if it ever happens to me”. However, people with dementia are not completely ‘other’ as is often assumed, and I have learned about living life more fully through interacting with them.

Independence

While independence is highly valued in our culture, interdependence and not independence is the ideal human achievement. We best reflect the image of our triune God as an interdependent community, rather than as independent individuals. Actually, insisting on independence can limit our ability to reach our full potential. The prodigal son (Luke 15) discovered that independence cost him the ability to do what he wanted to do and be what he wanted to be. Paradoxically, when he acknowledged his dependence on his father, he gained greater freedom than when he asserted his independence. I have seen the same principle in action when people have dementia. Determined and independent, Doris initially resisted all offers of assistance with housework and personal care. “I can do it. I’m not helpless, you know,” she insisted. However, she found that the housework took all day, she was always tired and she never had any time for things she enjoyed. Finally, she accepted help, and soon she was going out with her friends and enjoying life again. By acknowledging her dependence on others, she gained the freedom to be more fully herself.

In a community, it is not what an individual can do alone that counts. It’s what everyone can do together. The same applies to memory. Memories and history are not primarily individual, but rather they belong to the community. At a church service, a visitor recognised the elderly gentleman slumped in the wheelchair. He had dementia, and didn’t really show much interest in what was happening. “Mr. Brown! You probably don’t remember me, but you taught me at primary school.” Mr. Brown immediately sat up straighter, his face lit up with a broad grin. It didn’t matter that he couldn’t remember, because someone remembered him and that meant that he was someone. Ultimately, even if there is no one else who remembers, we can be sure that God will never forget us (Isaiah 49:15). Even if I forget who I am, God will always remember me, and that means I am still someone.

Living outside time

I cannot get by without my watch and my diary. I need both to ensure that I am where I am meant to be when I am meant to be there. The ability to keep track of time seems essential to life in our society. The ability to create new memories is often lost quite early in dementia, consequently the sense of time passing is lost. As Kathy left the aged care facility to take her mum out for a coffee, she commented wryly, “She won’t remember this tomorrow, but she does enjoy it at the time.” There is no yesterday in her mum’s world. She cannot remember yesterday. She cannot make plans, so there is no tomorrow either; there is only today. People with dementia live outside time since for them, there is only an eternal now. For many this is distressing as they struggle to fit into a world obsessed with clocks and schedules. A few transcend the struggle and find contentment living in the moment. Perhaps these few have caught a glimpse of eternity, living beyond our bondage to time.

Dementia Friendly Churches

It will undoubtedly require changes in thinking and practice to welcome people with dementia into many congregations. But I remember a time when churches were anything but child friendly. Children just being children attracted stern disapproval. Many churches can now tolerate children, so the culture change required for churches to accept people with dementia is not inconceivable.

To explore this topic further:

http://www.abc.net.au/religion/articles/2013/06/26/3790480.htm

http://www.patheos.com/Topics/Slow-Living/The-Unexpected-Blessing-of-Living-With-Someone-With-Dementia-Stacy-Lynn-Harp-06-17-2015

In the UK, Methodist Homes have developed guidelines for dementia friendly churches. http://www.mha.org.uk/files/3814/0931/8295/Growing_Dementia_Friendly_Churches.pdf

Kerryn Monger is a graduate of Vose Seminary, currently studying a master’s degree in Ageing and Pastoral Studies at Charles Sturt University. She is a chaplain in residential aged care with Bethanie (http://www.bethanie.com.au/chaplaincy/overview/) with a passion for ministry with seniors.