Justice for all with dementia
Updated: Jun 19, 2020
Do people with dementia receive justice or are they the marginalised in our society?
Anna Chaplain, Wendy Gleadle, has been self-isolating at home because – much to her frustration – she is in the 'vulnerable' category, but she has not been idle. As well as a flourishing telephone and prayer ministry, she has also been reflecting on topics associated with ministry among older people.
Recently we featured her blog, 'Musings from a locked down Anna Chaplain', and now she tackles the question of how fair a deal people with dementia are getting in society:
The dementia care home where I serve as an Anna Chaplain once had an open morning. They advertised widely on social media and on posters around the town, while I emailed all on our church mailing list and announced the event during a church service. On the day itself, a good number of relatives, the local press and our Member of Parliament came, but only one lady not actually associated with the care home attended.
My initial feelings of disappointment at the poor attendance from the local community led me to question this lack of interest. Perhaps this was just one small illustration of how those living with dementia are the marginalised in our modern society. Certainly, the subject of whether they receive justice in our culture has been questioned quite widely in the media lately.
A recent front-page newspaper article suggested, 'An elderly partner trying to care for a husband or wife with dementia is one of the loneliest things in the world.' This article stated that 32 day centres had been closed in three years, with 20 closing in the past year alone, and that these statistics coincide with 100,000 people living with dementia ending up in Accident and Emergency Departments. This must be devastating for vulnerable pensioners and be pushing families to breaking point.
More recently, on a television programme about the Covid 19 pandemic, a dementia care home supervisor said they were still waiting for personal protective equipment (PPE), tearfully stating, 'We are always the last in the queue for anything.'
But, perhaps, the tendency for those with dementia to be marginalised starts nearer to home than at a national level. In local communities, people with advancing dementia are often essentially housebound, or hidden away in care homes, where they are effectively removed from community life and easily forgotten.
As my own open day experience showed, many people with dementia will discover their local community is unfriendly or disinterested in them. And it is also sadly true of some church communities that regular attenders gradually disappear from congregational life. But in churches that do try to be inclusive, their marginalisation is often increased because the church tends to think they need to be invited in. But people with memory loss are already part of the church and need to be valued members of the church’s life, not invited in as outsiders. This exploration of national and local reactions leads me to reflect on the initial root causes of marginalisation experienced by many people living with dementia.
Once someone has been given the diagnosis of dementia, it seems the sense of marginalisation starts. 'We definitely felt the stigma, we didn’t want to talk about it to outsiders. The GP suggested we simply say she had memory loss and that people would understand – they didn’t' is a common response.
Friends and family find it challenging because it reduces the normal ability to communicate. The whole experience is a lonely one for both those diagnosed and their carers. While the person with dementia is still well enough to live at home, they can feel isolated because there is no service that brings the medical and care side together in a way that is personal for them.
This sense of marginalisation can be increased rather than lessened once the sufferer is admitted to a residential home for their care. Residents are often moved upstairs, where they are more confined, once their behaviour becomes more challenging. The symbolism conveyed by placing them upstairs, out of sight and hearing and behind many barriers speaks for itself. To quote a meditation by Henri Nouwen, such sidelining can only exacerbate 'not so much the handicap itself, but the accompanying feelings of being useless, worthless, unappreciated and unloved'. With such prejudices made manifest to individual sufferers, perhaps it is hardly surprising that their marginalisation is so magnified at a national level.
My main response to this situation is that if people with dementia are included and valued at a personal level, perhaps this will gradually have a ripple effect through society as a whole. Most of my own Anna Chaplaincy pastoral work is within the local care home, where I always attempt to include those residents ‘hidden away on the top floor’, treating each as a person of value to me and to God. To encourage the sense of inclusion in the community, I am fostering relationships between the generations, including visits from the toddler group, and singalong sessions with our gospel choir.
In my own role as an Anna Chaplain, I am being challenged to continue the time-honoured biblical tradition of speaking up for the marginalised and overlooked. At a wider level, in the area of dementia there are local and national initiatives and charities which the churches can join and encourage. The church’s presence is a reminder of the spiritual dimension of human well-being that might otherwise be overlooked. Indeed, the networking of churches with others in their community not only benefits those with dementia but also helps the whole of society to become more just and inclusive.
There is a wonderful vision in Zechariah 8:4–8, which says, 'Old men and old women shall again sit in the streets of Jerusalem, each with staff in hand because of their great age. And the streets of the city shall be full of boys and girls playing in its streets.' This is a picture of a community where people share together, and where the marginalised are at the centre of society instead of ignored on the edge. This is the community that is illustrated by Paul in 1 Corinthians 12:24-26, where 'extra honour and care are given to those parts that have less dignity'. It is my prayer that one day our own post-modern society will embrace these values, and those living with dementia will no longer be the marginalised and forgotten, but will be treated with justice as a central, valued and beloved part of our community.