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:
- Caring for a loved one with dementia is an endurance race of unknown length with only loss at the end.
- 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.
- 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.
- 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.”
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 Glyndŵr University: Albert Jewell, who was senior Chaplain with Methodist Homes for the Aged (MHA) before engaging in research into the care of older people; Jenny Rolph, 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, formerly National Adviser (Unity-in-Mission) for the Church of England.
Further information and comment from:
Albert Jewell ajj633@btinternet.com 0113 278 9438
John Cole john.cole@cantab.net 01652 408506
Jenny Rolph jenny.rolph6@gmail.com 01962 862574
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.