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Dementia: The forgotten heroes. 

Churchgoing carers speak of their long and lonely road

In a new and pioneering study, those caring for loved ones with dementia emerge as the forgotten heroes amongst carers. 53 churchgoers who have (or have recently had) this caring role speak out passionately for the first time about their experience. Four key messages emerge:

  1. Caring for a loved one with dementia is an endurance race of unknown length with only loss at the end.
  2. As their caring takes over their lives, and becomes progressively more difficult over time, so also these carers lose contact with the world around them. They are too often ‘out of sight and out of mind’ as others avoid trying to relate to the person with dementia.
  3. When, as well as losing their social contacts, they see the personality of the one they love slowly breaking down, their loneliness can be profound.
  4. The support offered by medical, social and welfare services – and by local churches – is patchy at best, and often shows a lack of understanding of the emotional strains the carers are under.

One comment from the study sums up the unique challenges faced by these carers: It’s like a bereavement, but no one has died.” Comments from four other carers in the study illustrate the pain and conflict of the emotions they were feeling:

  • I suspect nobody can comprehend how much it has hurt and made me question. If any good can come from my awful experience it is this: Whenever anyone is a carer do not assume they are OK. They are probably not.”
  • I realised as I was answering your questionnaire just how much anger, frustration and unfairness I felt reflecting on my years as a carer. They were undoubtedly the darkest years of my life, and the years I felt most spiritually dead.”
  • One of the best pieces of advice I was given was, ‘At the end of the day does the thing you are worrying about really matter?’ Most of the time the answer is NO.”
  • Keep looking for the person he/she used to be and remember he/she is still there needing our love and ready to return it given the opportunity.”

More …

As churchgoers the 53 respondents, from seven denominations, present a mixed picture. All report that their faith is generally supportive, although often challenged. For many, regular churchgoing becomes more difficult, and becomes impossible for some. Individuals characterise how they value their faith in very different ways, just over half describing their faith as ‘unshaken’ as a result of their experience, all but one of the remainder affirming that it has been ‘deepened’.

Dementia mostly affects older people. The majority of their immediate carers are therefore themselves also elderly. In this study the ages of respondents range from 50 plus to over 80. 42 of the 53 respondents are spouses. All but six of these are in their 70s or 80s.

The four authors of this study are themselves in their mid 70s or older. Three are honorary fellows of Glyndwr University: Albert Jewell ajj633@btinternet.com, who was senior Chaplain with Methodist Homes for the Aged (MHA) before engaging in research into the care of older people; Jenny Rolph jenny.rolph6@gmail.com, who after a career in higher education developed and ran a Christian counselling service in Winchester, and Paul Rolph, who after a similar career in higher education was also County Ecumenical Officer for Hampshire and the Isle of Wight. The fourth contributor to this study is John Cole john.cole@cantab.net , formerly National Adviser (Unity-in-Mission) for the Church of England.

 The results of this research are published in two academic papers:

Jewell, A., Cole, J., Rolph J., & Rolph, P. (2016). The faith of primary carers of persons with dementia. The Journal of Religion, Spirituality and Aging, 28, 313-337. doi:10.1080/15528030.2016.1193098

Jewell, A., Cole, J., Rolph J., & Rolph, P. (2017). The loneliness of the long distance-carer: The experience of primary carers of loved-ones with dementia. Rural Theology, 15, 2, 97-112. doi: 10.1080/14704994.2017.1375473. For possible free access to this article contact Albert Jewell ajj633@btinternet.com.

You can also read a more detailed article about the research here 

 

 

Have you heard of Fresh Expressions? Fresh Expressions works with Christians from a broad range of denominations and traditions and seeks to transform communities and individuals through championing, resourcing and multiplying new ways of being church. There are some great examples of creating fresh expressions amongst older people, particularly, but not exclusively, those who live in sheltered housing accommodation here https://www.freshexpressions.org.uk/guide/examples/older . You will also find some really helpful practical resources listed on this area of the Fresh Expressions website. Fresh Expressions for older people is called “Neither Young Nor Old” (NYNO).  The title was inspired by Galatians 3.28, ‘There is neither Jew nor Greek, there is neither slave nor free, there is neither male nor female; for all are one in Christ Jesus’. In Christ Jesus there is also neither young nor old.

 

 

Dementia Without Walls

A continuing project to assist those working with people suffering from dementia.  The original project was supported by the Joseph Rowntree Foundation which continues to support this work.

Go to http://dementiawithoutwalls.org.uk/ for more information including videos, news and links to interesting practice.

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Ageing Issues Study Network

Christians on Ageing launched a new Network in September 2015.  The idea is simple: to bring together people who have an academic, practical and pastoral experience of issues concerning age and ageing – and to allow the conversation to flow, and ideas to be exchanged. It is not intended to pursue research just from an academic aspect but to confront important issues more broadly, to reflect on them, and to propose ideas for implementation or further study. The new Network will follow the pattern established by our Dementia Network which involves over 250 people, from a wide variety of backgrounds, in the exchange of information and good practice on issues of interest to dementia sufferers and their carers. An initial consultation has started with people who have expressed an interest.  If you would like to be part of the Network please send an e-mail to info@ccoa.org.uk or any of the contacts listed on our website.

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News from similar organisations

 

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 Training

Dementia Services Development Centre, University of Stirling FK9 4LA

run numerous training course in Stirling and in various locations around the UK.

For current information please go to

01786 467740 ; dementia@stir.ac.uk ; www.dementia.stir.ac.uk.

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