Living with dementia

No cure but God’s promises

My confirmation text offers me comfort and encouragement and is one I often recall: ‘I thank my God every time I remember you. In all my prayers for all of you, I always pray with joy because of your partnership in the gospel from the first day until now, being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus’ (Philippians 1:3-6).

And if dementia should be your DESTINY, God will always be there for you and for those dear to you.

The promise in that text applies to all of us – no matter what age we are, or what frailties we have.

My husband has his birthday in August and I’m wondering what sort of tacky messages will emerge on his birthday cards. Will there be references to uncontrollable bodily functions? Or will there be bottles of wine (he likes an occasional glass), golf clubs (he has terrible ball skills), or sailing boats (he comes from Port Adelaide)? Or a reference to the fact he is getting older and must be entering his dotage?

One of the challenges of ageing is the increasing frailty of people around us. We also develop a growing awareness of our own declining health and wellbeing, whether physical, emotional or mental. One of the scariest possibilities may well be dementia – whether it is a personal diagnosis or affecting someone near and dear to us.

Some people choose to accept what is happening, and adapt their lifestyle accordingly. Others will seek information and treatment if it is available. Both are valid choices.

There is no magical cure for dementia. But you can get help and support from sources such as the Alzheimer’s Australia website or on 1800 100 500 or, if you are in New Zealand, the Alzheimer’s New Zealand website or 0800 004 001.

And if living with dementia is your destiny, God will always be there for you and for those dear to you. I love the pictures in these words: ‘There is no-one like the God of Jeshurun who rides on the heavens to help you and on the clouds in his majesty. The eternal God is your refuge, and underneath are the everlasting arms’ (Deuteronomy 33:26,27).

Recently I wrote a booklet on dementia for Lutheran Media. Through it I shared the stories of some courageous and generous people, regarding their experiences living with this debilitating and seemingly indiscriminate disease. For them and all of us, there is hope through the promises of God. The following are excerpts from that booklet.

Ann and Timothy

My friend Ann has dementia. She does not want you to feel sorry for her. This is Ann’s story: I am a 62 year-old wife to Tim and mother to four adult sons and a daughter-in-law. I was a former nurse, nurse administrator and more recently coordinator of programs for the aged and for people with dementia. Things have really changed! At the end of 2011, I started experiencing memory problems, and the next year I was given a diagnosis of younger-onset dementia – quite likely Alzheimer’s. I was 59. To say that Tim and I were shocked is an understatement. We both had a fear of the future. In order to help stay socially engaged, and to contribute in the community, I became a volunteer at The Hutt Street Centre (Adelaide) for homeless people. I love my volunteer work. Not only do I feel a keen sense of satisfaction, but I also feel appreciated. Thank goodness for my family and our sense of humour! Although we can’t be certain about the future, we know that God holds the future and us in His hands.

Raymond and Delia (not their real names)

My friend Delia’s husband Raymond has Lewy Body Dementia. He is now in a residential aged care facility. One of Delia’s coping strategies is her use of Facebook. Through it her friends are able to track Raymond’s high points and the challenges that he and Delia need to address. This medium provides her with immediate support from her circle of friends and family. Messages of encouragement and offers of prayer support flood in. I know that both Delia and Raymond’s faith has been an integral part of their lives. Raymond has now lost his ability to respond to prayers or hymns or rites. But Delia knows that he is still a child of God and that God’s promises remain relevant for Raymond and for her. Not everyone is as blessed as Raymond in having a caring spouse to visit and support them. Caring people make a difference to someone with dementia. Maybe you could be visiting a friend or relative who could be socially isolated.

Nancy and Maureen (not their real names)

I recall hearing about Nancy who had been in an aged care facility for some time. She had no visitors, and her dementia had progressed significantly. Nancy was allocated a volunteer visitor, Maureen, who came and sat with her and talked to her for some time without a response. After several such visits, Maureen explained that she would not be coming back and said ‘good-bye’ to Nancy. As she walked to the door, she heard a frail voice say ‘You don’t know what it means.’ Maureen continued to visit Nancy until Nancy died. Maureen was able to provide contact and to share with her in increasingly simple ways.

What is dementia?

Dementia relates to loss of memory or cognitive impairment. It is estimated that more than 340,000 Australians live with dementia.

Is dementia a disease of the aged?

Dementia mainly affects people over 65. While uncommon, younger-onset dementia has been diagnosed in people from 30 to 40 years of age onwards.

Can dementia be prevented?

No. However, better cardiovascular health, and maintaining a physically, socially and cognitively active lifestyle through middle age are thought to probably protect against developing dementia.

How is dementia detected?

Regardless of a person’s age, a full psychological and medical assessment is required to eliminate other causes and correctly diagnose dementia.

What are the symptoms?

They may include gradually increasing memory loss, confusion, unclear thinking, loss of problem-solving skills, agitated behaviour or delusions, becoming lost in familiar circumstances, loss of interest in usual activities.

What causes dementia?

There are many causes, but no specific disease is responsible. Most common are Alzheimer’s disease (50-75%) and vascular dementia often caused by a stroke (20-30%).

From the Lutheran Media fact sheet Dementia Searching for hope.

A former director of Lutheran Community Care in South Australia, Colleen Fitzpatrick is a member of the Committee for Lutheran Aged Care Australia, a gathering of representatives from aged care organisations from around Australia.

Order a copy of the booklet Dementia a real life challenge, or to view videos or listen to radio interviews on dementia here.

This feature story comes from The Lutheran August 2016. Visit the website to find out more about The Lutheran or to subscribe.