Love and Dementia: Small Acts of Love
This was the title of a two day National Symposium held recently in the regional city of Ballarat, Victoria. The theme of love was a deliberate focus on the small acts of love which enhance life for people with dementia as well as their carers, partners and friends, shifting the emphasis from the measurable task oriented care that characterises much of the aged care industry. It is hoped that the phrase “small acts of love” will gain worldwide acknowledgement and be affirmed as a valid and efficacious approach to dementia. The Symposium was an extraordinarily powerful and poignant experience, given that everyone present was touched in some way by the realities of dementia.
Some of the themes that suffused the presentations were:
- the importance of including rather than quarantining people with dementia;
- the need to create useful and productive activities for those with dementia that cater to individual needs and gifts rather than the collective, generic activities offered in most residential care facilities;
- the significance of ongoing relationships rather than abandonment of the person with dementia (one younger man with early onset Alzheimers spoke about the devastation of the experience of most of his friends falling off and not coping with the disease)
- and the desire to make communities overtly “dementia friendly”, a particularly crucial task given the huge increase in expected rates of dementia in the next twenty years or so.
- The reality that “small acts of love” are demanding and sometimes gruelling in the face of the terrible havoc wrought by dementia.
Speakers included Sue Pieters Hawke, ambassador for Alzheimer’s Australia, daughter of Bob Hawke, former Prime Minister of Australia and Hazel, who died a few years ago, and whose experience with Alzheimer’s was well documented. Virginia Hunter Sampson from Texas, USA, spoke of the need for self-compassion in the torrid realities of caring for her husband who died from a form of dementia. Ann Zubrick from Western Australia, who is a Quaker and academic, reflected on her experiences of aged care facilities from her differing perspective as a volunteer and and a board member. One of the most informative sessions was presented by a group of police officers from Ballarat, whose experience with dementia in the community has led to a special unit being established to assist vulnerable senior citizens.
A family from rural Victoria spoke about the impact on each of them of last year’s diagnosis of early onset Alzheimer’s for the husband and father who is in his early fifties. Very inspiring indeed was the story of how the Catholic high school of which he has been Deputy Principal is endeavouring to accommodate him, and how the school community- staff and students-has been counselled and educated about what to expect and how best to assist him.
Mercy Associate Anne Tudor shared the story of her partner Edie Mayhew's journey with early onset dementia and how this has changed their lives and their relationship. Anne spoke candidly about the stresses and the graces of dementia. Edie herself presented a segment on the joys and challenges of caring for her official Dementia Assistance dog Melvin, a beautiful specially trained Labrador.
The co-ordinator of the conference, Dr Catherine Barrett, who is Director of an organisation called Celebrate Ageing founded to challenge ageism and enhance respect for the elderly, had read a poem that I wrote about a friend, a Sister of Mercy, who has Alzheimer’s. The poem, titled The Dance of the Seagulls, can be read on my website. Dr Barrett invited me to speak at the Symposium and reflect on the nature of ongoing friendship with someone with dementia, as part of a segment about caring for people in residential aged care.
One of the ongoing interests of some of us who attended the Symposium is Dementia and Spirituality: how to assist those with dementia in their devotional and spiritual practice, and what might be developed to enhance that experience. I am keen to hear from anyone who might have some suggestions, experiences to share on the subject, or would like to link in with this ongoing conversation. If you, a friend with dementia, or care worker you know are interested, please get in touch.
My presentation at the Symposium, titled The Four Rs of Dementia, can be downloaded below. I share it because I believe we need to be more attuned to the needs of people with dementia, more inclusive of them in our community situations, and more informed about a condition that affects many around us. Sr Patricia Kenny rsm has generously given permission for her story to be shared, and so we trust it to your gentle reading.