Dementia and selective memory in fiction

There are many causes of dementia, including Alzheimer’s disease. In Australia, more than 332,000 people in Australia currently suffer from Alzheimer’s alone. As the population ages, the incidence of dementia also is expected to increase.

As a person’s symptoms of dementia increase, more and more short-term memory is lost. The person will live much more in the past. When the present time makes no sense, the past is the only place they can live. Sadly, even those memories are eventually lost as the disease advances.

Emma Healey’s new book, Elizabeth is Missing is a novel with dementia t its heart.  The book examines issues related to dementia and it is also a dark psychological thriller.

A novel with dementia at its heart.

A novel with dementia at its heart.

Six of Elizabeth’s family members have been stricken with dementia. The book began from a chance remark from Elizabeth’s grandmother, who was suffering at the time from mild dementia. She told Emma and her family that her friend was missing. That was the trigger for an imagined story.

The book is written from the point of view of Maud, a woman who has dementia. The author has imagined herself into the mind of another, much older woman. She also said that she made use of notes of conversations she had with her grandmother. She used this experience to inform her book.

Author Elizabeth Healey

Author Elizabeth Healey

Many writers say they use snippets of overheard conversations in their work. Emma Healey admits to deliberately making notes. She recorded conversations with her afflicted grandmother to use in a novel. This takes the practice to an altogether different level!

People with dementia can remember selectively. They are frequently unreliable witnesses even to their own lives and experiences. Sometimes they remember events long past. They recount those events as if they are occurring in the present or recent past.

Caring for a person with dementia is arduous, often thankless, labour. Working with them can be likened to detective work. What are they trying to tell us? What exactly are we hearing from this person? What time of their life are they talking about? How can we connect with them? How can we continue to respect them and show that respect?

Because what they say can be undependable, it does not mean we can discount what they tell us. I once worked in a dementia-specific aged care facility. All of the residents were dementia sufferers. One of the residents complained loudly that someone was hurting her. The staff, used to working with these apparently unreliable witnesses, were inclined to disbelieve her. But one skilled registered nurse took the old woman seriously.

When the nurse examined the resident, she found multiple bruises on the old woman’s arms and torso.  Her fragile skin had been broken by too-rough handling by a staff member. The bruising was new. The police were called. A staff member was stood down pending an enquiry. He was later charged and convicted of assault.

Old and vulnerable woman (Image courtesy of Advocare)

Old and vulnerable woman (Image courtesy of Advocare)

People with dementia are particularly vulnerable. They can be assaulted by strangers. Family members, also, can abuse them financially, physically, emotionally and sexually.

Returning to the novel Elizabeth is Missing. The protagonist is an unreliable narrator. Can the reader believe what she says? Which parts of the story are true? What should we question? What should we discard?

It is absolutely fine to write an unreliable narrator in fiction. We know the story is not true, so it does not matter whether the teller of the story can be trusted.

This is one of the major differences between fiction and life-writing. In memoir and autobiography, the writer is constrained to tell the truth as he or she knows it. The writer forms a contract with the readers that the story is the truth, and that it can be believed.   It is particularly important that a life-writer tells the emotional truth.

According to Emma Healey, there is always a gap in writing that the reader must fill in. No writer can tell a complete story.

Elizabeth is Missing was fun to write,’ Emma Healey told a large audience at the Perth Writers Festival 2015. ‘Humour is important when dealing with difficult subjects.’

If you suspect someone, including you, is being abused by a family member, contact Adovcare’s Elder Abuse Help Line  on 1300 724 679

For information about dementia contact Alzheimer’s Australia. The number of the National Alzheimer’s Helpline is 1800 100 500

 

Coming soon

Relationships Australia WA offers a new workshop which I think may have particular interest for older men and women. The facilitator is my friend, Elizabeth Brennan, a remarkable older woman with many years experience as a relationships educator and facilitator of groups of many different types. Details of the workshop are as follows:

RA-Logo

CHANGE AND LOSS

Healing and Learning to Live Again

Change and the accompanying experience of loss, is part of everyday life.  Life itself begins with loss – the separation from the womb.  We are continuously faced with separation, endings and major changes.  In order to move on, let go and embrace what is new, we need to grieve the loss. How we mange loss and grief greatly effects our relationships and our well-being.

This workshop will discuss how to:

  • Gain a deeper understanding of the grief process
  • Identify personal core issues of grief
  • Identify place in the grief process
  • Learn skills to assist the process
  • Develop strategies that will enable moving on
At  22 Southport Street, corner of Cambridge Street WEST LEEDERVILLE on  Tuesday 29 April  2014 from 9/30 am to 12.30 pm

Cost: $25

For further information and to enrol please phone 9489 6322

***************

ST8252_SexandAgeingdigital

***************

 THIRD NATIONAL CONFERENCE ON ELDER ABUSE

Advocare is proud to be at the forefront of combating elder abuse in Australia and will host the 3rd National Elder Abuse Conference. Entitled ‘Unlocking Solutions’, our organising committee will embrace a program that looks into all aspects of elder abuse.

Already regarded by industry leaders as a must attend event, this conference will bring together dynamic global experts to share information on topics that will assist in elder abuse research, intervention and policy. There will also be plenty of opportunities for networking, reacquainting with old colleagues and meeting new ones.

The two day conference will be followed by a unique one day workshop which will look at the practical and theoretical applications that arise from the conference.

I encourage delegates from different professions to attend, as unlocking solutions to elder abuse requires a collaborative effort from all counterparts.

Register your interest for the conference and workshop and help change the outcome for thousands of elder abuse victims in Australia.

See you in Perth.

Greg Mahney

Chief Executive Officer, Australian Representative for the International Network for the Prevention of Elder Abuse; Chairperson of the Alliance for the Prevention of Elder Abuse

enCuuh7A

Invitation to Submit an Abstract

We invite you to submit an abstract for a contribution to the 2014 Conference Program. The deadline for abstract proposals is Friday 2 May 2014.

Abstracts should generally be limited to the suggested themes and underlying topics. Thought provoking, creative abstracts are highly encouraged to stimulate the interest and participation of delegates throughout the Conference.

Conference Themes

Research and Innovation

Areas such as research projects, technological advancements and innovative new practices, and new ways that organisations are doing ‘old business’.

Projects

Projects that have helped your organisation to recognise, respond or record elder abuse, including but not limited to help lines, databases, identification tools and marketing strategies.

Collaboration, Information Sharing and Engagement

Different ways in which your organisation works with others to spread messages, promote ideas and events, fund projects and activities and share valuable information and statistics. We are also looking at ways in which you think we can better record Elder Abuse ie managing statistic, National Linkages.

Education, Training and Workforce Development

Including, but not limited to new and existing training programs, tertiary courses and other workforce development methods.

Learning from Other Disciplines

We are looking for ways in which elder abuse agencies can learn from other disciplines that excel in areas such as information sharing, reporting and recording, victim protection, relationship building and fundraising.

Future Visions

We are looking to find out new ways to further advance the prevention of elder abuse eg changing perceptions, changing laws, changing the way we look at or think about things.

For guidelines, click to contact Advocare Inc., or call Advocare on 9479 7566 and speak to Greg Mahney.

imagesKF0SI1YZ

Thank you for visiting my blog. If you would like to be notified of new posts, please subscribe using the button to the right of this page.

Launch of new protocol

Last week, around a hundred professionals whose work involves older people and their well-being attended a launch of a document, Elder Abuse Protocol: Guidelines for Action. The event was hosted by Advocare Inc., the lead agency of the Alliance for the Prevention of Elder Abuse:WA* (APEA:WA) at the Leadership Centre of the Australian Institute of Management. As the inaugural CEO of Advocare Inc. I was privileged to attend and delighted to see the work that these two organisations are doing.

enCuuh7A

imagesKF0SI1YZ

The new Protocol provides general information about elder abuse, as well as information about appropriate responses to elder abuse for staff who work in organisations that deal with older people.

A story

A seventy-year-old woman in a nursing home finds two masked men in her room early one morning. She yells for help but they knock to the ground and she suffers minor bruising. The intruders steal two handbags containing small change that belong to the staff on duty. The incident is reported on television news and on page 5 of the local newspaper. The intruders are later caught and convicted of break and entry, assault and theft.

Another story

A woman of similar age who lives in a nearby suburb does not escape so lightly. She has slight paralysis on her left side as the result of a cerebrovascular accident (stroke) a few years ago. She’s mentally alert and competent and lives alone with some support from aged care services. She  completes a couple of cryptic cross-word puzzles a week; enjoys putting 1 000 piece jigsaw puzzles together; and sees friends regularly.

Unfortunately, many years ago, thinking she was preparing well for her old age, she donated enduring power of attorney to her only son so that he could manage her finances if she was ever incapable of looking after them herself. In the weeks while she was in hospital immediately following the stroke, when she had temporarily lost her decision-making capacity, he assumed power of attorney and took control of her finances.

Now he refuses to relinquish that power. He manages her bank accounts, pays all her household bills, gives her an allowance for food, and maintains tight control over her money. She is distressed by the predicament she finds herself in. The most recent episode was his response when she asked for $200 from her bank account to replace her shabby tracksuits and underclothes.

‘Don’t be so silly, Mum,’ he said.You don’t need new clothes. You don’t go anywhere. Why waste money on stuff you don’t need?’

The son may not see his behaviour as elder abuse. After all, he might argue, the old lady’s needs are being met. He is only looking after the inheritance he will, in his opinion, rightly acquire when she dies. He does not acknowledge that he no longer has a right to her power of attorney or access to her finances; and the money he ‘refuses’ to ‘give’ his mother is not his, but hers.

There have been no headlines in newspapers about the financial abuse of this old woman, nor are there likely to be in the near future. Financial abuse of elders takes many forms, and this story is simply one illustration.

There are other kinds of violence inflicted on older men and women by their families and ‘friends’ – people everyone expects they should be able to trust. Elder abuse includes physical, emotional and social abuse and neglect. We don’t hear a lot about it. No one likes to admit they are being mistreated and many older people are afraid to talk about it.

‘Elder abuse is not something newspapers like to cover,’ a journalist told me earlier this week. ‘Even if I wrote a really good article, it wouldn’t be printed.’

old and young hands 1

Short personal history

In the 1970s, domestic violence was not considered a crime. Men were allowed, under the law, to rape their wives. Police frequently sided with the perpetrator when called to a scene of domestic violence. The courts and the churches often turned a blind eye to the plight of victims of familial violence. They declined to condemn perpetrators in the same way they blindly failed to condemn perpetrators of child abuse.

The second wave Feminist Movement went some way to change community attitudes towards domestic violence.

In the 1970s a group of people, all of us passionate about social justice, set up Emmaus, the second women’s refuge in Western Australia in an old, four-bedroom house that we rented in Inglewood. We had little money, a great deal of goodwill – and no government assistance. Emmaus was soon full of women and children escaping violent husbands and fathers.

In the early 1980s, I was invited to represent Community Health Nurses on the Western Australian Advisory and Coordinating Committee on Child Abuse. At the time, I was working as the nurse in a high school and encountered children who were victims of abuse on an almost daily basis.

In the early 1990s, farsighted social workers, counsellors, teachers and others concerned with the welfare of women, children and families began to make connections, not seen before, between domestic violence and child abuse.

These days it is widely acknowledged that domestic violence in all its forms including child abuse is never OK.

But so far in our society there has been no major breakthrough in attitudes to elder abuse . Elder abuse receives little publicity and is barely recognised, perhaps because older people in our society receive less respect than they deserve.

New developments

However, there are some organisations which work tirelessly to bring this injustice to the consciousness of the community. 

 Advocare Inc. and the Alliance for the Prevention of Elder Abuse:WA (APEA:WA) are two such organisations. They define elder abuse as ‘any act which causes harm to an older person and occurs within an informal relationship of trust, such as family or friends…Abuse can take many forms, including financial or material abuse, neglect, emotional or psychological abuse, social abuse, physical abuse, or sexual abuse’.

According to APEAWA, elder abuse is underreported. But it is estimated that between two and five percent of older people will experience abuse, which means that between  6 000 and 15 000 older Western Australians could be affected.

Section of audience at launch of Elder Abuse Protocol

Section of audience at launch of Elder Abuse Protocol

The protocol launched last week states:

In addressing elder abuse, the rights of the older person must be supported. Older people have the right to make decision, take risks, or refuse supports and interventions, as long as they have the cognitive capacity to make informed decision and can understand the consequences of those actions.

Message

If you think you may be, or could in future be, the victim or elder abuse, or if you suspect someone you know may be the victim, please ring Advocare Inc. on (08) 9479 7566 and talk to an advocate who will provide information about the steps you can take, and if necessary support you.

Congratulations

Congratulations to everyone involved in producing Elder Abuse Protocol: Guidelines for Action, such a successful launch, and to those who supported its publication, especially the Department of Local Government and Communities for funding.

 ***

*Agencies which comprise APEA:WA are Advocare Incorporated; the Department of Aboriginal Affairs: Department of Local Government and Communities; Department of Health WA; Disability Services Commission;  Legal Aid (WA); Office of the Chief Psychiatrist; Office of the Public Advocate; Public Trustee; WA Police; Western Australian Local Government Association.

Thank you for visiting my blog.