June 23, 2017

Relationships and dementia - Alzheimer’s Australia NSW Discussion Paper Number 19 2017

Increased support needed for people with dementia and their families to maintain relationships

Quality respite and counselling services are needed to ensure people living with dementia, their carers and families are well supported in order to maintain their relationships as dementia progresses, a new discussion paper has found.

The discussion paper, Relationships and Dementia, released by Alzheimer’s Australia NSW, reports that society needs to recognise, acknowledge and understand that people living with dementia, their carers and families face relationship difficulties and challenges, and more support is needed to enable people to work through complex feelings of grief and loss.

Alzheimer’s Australia NSW CEO The Hon. John Watkins AM said family relationships are already complex; living with dementia increases this complexity, and as dementia progresses, relationships need to be reframed and constantly renegotiated.

“Dementia impacts on the roles people hold within the family. If a person with dementia was the provider and decision-maker, or if responsibilities were shared, that role is then taken on solely by their spouse or children,” Mr Watkins said.

“Not only does the person living with dementia lose their independence, but the roles of their partner or children will also change.

“A child caring for their mother or father may feel the role is reversed, that they are now parenting their parent. A spouse caring for their husband or wife may also feel grief for the loss of their life companion, their confidante.
“What is often not discussed is the effect dementia has on physical intimacy in relationships, and the grief and loneliness that this causes,” Mr Watkins said.

“When a partner is moved into residential care, for those couples who still share a physical relationship, this can create further challenges to that bond, particularly regarding issues of privacy, when often a spouse may be sharing a room with others.”

Mr Watkins said that residential aged care facilities need to provide adequate support and privacy for people with dementia and their partners to enable them to maintain their relationships with dignity, which is crucial for wellbeing.

Key recommendations from the discussion paper:

1. The Australian Government funds quality respite services to support carers to continue caring for loved ones with dementia at home and avoid premature entry into residential aged care.

2. The Australian Government increases funding for counselling services for people with dementia and carers.

3. The Australian Government funds a pilot program of telephone-based support groups for carers of people with dementia (especially for people from rural and remote areas).

4. The Australian Government fund further research and knowledge translation activities on the impact of dementia on relationships in order to improve provision of targeted, relevant support services.

5. Residential aged care facilities provide support to people living with dementia and carers to maintain relationships and enable opportunities for physical intimacy within aged care homes. For example, organisational policies and staff training to address these issues.

A full copy of the discussion paper, along with the full list of recommendations, can be found at https://nsw.fightdementia.org.au/nsw/research

Books mentioned in the further reading section are available as a books and eBooks and audio-books and includes :
to borrow or reserve any items email nsw.library@alzheimers.org.au 
& via    
Dementia : support for family and friends
by Dave Pulsford and Rachel Thompson.
For friends, family members and carers of people with dementia, understanding the condition and coping with the impact it has on their lives can be extremely challenging. This book, written specifically for these groups, explores each stage of the journey with dementia and explains not only how it will affect the person with the condition, but also those around them, and how best to offer support and where to get professional and informal assistance. It focuses on the progressive nature of dementia and the issues that can arise as a result, and gives practical advice that can help to ensure the best possible quality of life both for the person with dementia and the people around them.

Living your best with early-stage Alzheimer's : an essential guide
by Lisa Snyder
Recent medical advances have made it possible to diagnose Alzheimer's when symptoms are mild and new drugs are under investigation to help slow progression of the disease. Today, when a person is diagnosed, they may have many years ahead with only mild symptoms. The result is that a growing number of people with early-stage Alzheimer's are seeking information about how to take charge of their lives, manage symptoms, and cope effectively with the disease. This book is a working guide to help the person with Alzheimer's feel empowered to move forward in life in light of this challenging diagnosis.

Loving someone who has dementia : how to find hope while coping with stress and grief
by Pauline Boss
Research-based advice for people who care for someone with dementia. When Someone You Love Has Dementia is a new kind of caregiving book. It's not about the usual techniques, but about how to manage on-going stress and grief. Dr. Boss helps caregivers find hope in "ambiguous loss" having a loved one both here and not here, physically present but psychologically absent. Outlines seven guidelines to stay resilient while caring for someone who has dementia. Discusses the meaning of relationships with individuals who are cognitively impaired and no longer as they used to be. Offers approaches to understand and cope with the emotional strain of care-giving. Boss's book builds on research and clinical experience, yet the material is presented as a conversation. She shows you a way to embrace rather than resist the ambiguity in your relationship with someone who has dementia.

To love what is : a marriage transformed
One day it happens: the dreaded event that will change your life forever. For Alix Kates Shulman, it happened in a remote seaside cabin on a coastal Maine island--where the very isolation that makes for a perfect artist's retreat can also put life at risk. She woke to find that her beloved husband had fallen the nine feet from their sleeping loft and was lying on the floor below, deathly still. Though Scott would survive, he suffered an injury that left him seriously brain impaired. He was the same--but not the same. In this elegant memoir, describes the ongoing anxieties and risks--and surprising rewards--she experiences as she reorganizes her world to care for her husband and discovers that what might have seemed a life sentence to some has evolved into something unexpectedly rich.

Ten thousand joys & ten thousand sorrows : a couple's journey through Alzheimer's
by Olivia Ames Hoblitzelle. (foreword by Jon Kabat-Zinn)
When faced with life's greatest challenges, how do we continue to live with acceptance, equanimity, and a peaceful heart? This profound and courageous memoir seeks to answer those questions, especially when facing the enormous challenges of mental loss through any form of dementia, especially Alzheimer's.
Given Hob and Olivia Hoblitzelle's rich background in psychology, Buddhist meditation and the wisdom traditions, they were in a unique position to help others by sharing how they negotiated this heart-breaking illness. This memoir is the fruit of their shared experience. Olivia not only writes about the inspirations and spiritual perspectives that sustained them, but gives us an intimate account of how they faced loss, crisis, and eventually death.
Advice offered by the author to someone who is caring for a partner with Alzheimer’s?
Accept that this is one of the most difficult challenges you’ll ever face.
When you realize that you’re their lifeline in a dissolving world, every supportive and loving gesture is a gift to them.
For me, when one of my spiritual teachers suggested that caregiving was an opportunity for me to practice the positive qualities of compassion, patience, generosity, and kindness, it helped give meaning to the humblest of tasks.
Have compassion for yourself when you feel frustrated, impatient, or angry, because caring for an Alzheimer’s patient is a Herculean task.
Ask friends and family for help! People want to help out, and there’s a real risk in becoming isolated. Know what gives the patient comfort or reassurance. For us, it was always touch, physical closeness, music and beauty.

Come back early today
by Marie Marley

The book narrates the story of our early romantic years together, including Ed’s quintessential old-school European manners, our subsequent decades-long relationship as soul mates, and our eventual triumph over his Alzheimer’s. Come Back Early Today does not give advice to caregivers. But it does illustrate how Ed’s disease progressed and how I dealt with the numerous issues that typically arise when caring for someone with Alzheimer’s. So you can imagine my surprise when most of the book’s reviewers focused heavily on the parts that describe how I cared for Ed when he had dementia. It shows how I managed everything from denial, getting a diagnosis, convincing him to go to a long-term care facility, arranging for a DNR (do not resuscitate) order, to end-of-life issues care issues and hospice considerations. One day I unexpectedly received a letter from a Cape Coral woman whose husband has Alzheimer’s. She wrote: “The main reason I am writing is to tell you how much I liked your book. Since my husband was diagnosed [with Alzheimer's] I have read many books, attended some courses and joined a support group. Your book is the only one that gave me hope. That’s when I realized I had accidentally written a resource for Alzheimer’s caregivers that also includes a love story rather than a love story that just happens to illustrate solutions to several dementia caregiving issues.

Green vanilla tea
Marie Williams

When Marie Williams' husband Dominic started buying banana Paddle Pops by the boxful it was out of character for a man who was fit and health conscious. Dominic, Marie and their two sons had migrated to Australia to have a life where they shared more family time -- when gradually Dominic's behaviour became more and more unpredictable. It took nearly four years before there was a diagnosis of early onset dementia coupled with motor neurone disease. Marie began to write, as she says, as a refuge from the chaos and as a way to make sense of her changing world. Her book, Green Vanilla Tea, has just been named winner of the Finch Memoir Prize.

One day at a time : sharing life with dementiaCare partners are the essential ingredient in the life of a person diagnosed with dementia. They enter this role unexpectedly, untrained and totally unprepared for their own mixture of emotions. In this her first book, Dorothy shares her insights into learning how to cope, live and laugh as a carer of a person with dementia in order to help family, friends and the community to realise the emotional trauma of the early years as a carer.

Jan's story : love lost to the long goodbye of Alzheimer's

"...Eventually, Petersen made a decision that is often privately made but rarely discussed. He felt his only chance of survival was to find new love..."

Barry Petersen, long-time CBS news correspondent, has an impressive list of endorsements for his book, including testimonies from Katie Couric, Brian Williams, and Rosalynn Carter. 

This is a love story with a controversial and important ending.

Petersen and his wife met and quickly fell passionately in love. Their marriage was enduring and happy as they shared his life as a traveling correspondent. Then came the diagnosis that would explain Jan’s changing behaviour. Beautiful, vivacious, smart Jan was diagnosed with younger-onset Alzheimer’s disease.

Jan and Barry faced the challenge bravely, holding hands literally and figuratively as they fought this intruder. Eventually, it became obvious he couldn’t keep Jan safe and still work. With the blessing of Jan’s family, Petersen found an excellent assisted living centre for Jan in. The decision to move her was agonizing.

Jan continued to deteriorate and no longer knew “her Barry.” She knew a man called Barry, but he was a younger man whom she had loved. This man visiting her was a stranger. Depression gripped Petersen so severely that family and friends were concerned about his mental health. 

Eventually, Petersen made a decision that is often privately made but rarely discussed. He felt his only chance of survival was to find new love. He met a widow who had loved her spouse as much as he loved Jan. They became a couple, with the blessings of most of Jan’s family and friends.

A funny thing happened on the way to the nursing home: a different handbook for carers of dementia patients by Jim Connor 

This short, funny and sad book is a series of snapshots rather than a handbook as such. It describes, with a mixture of humour and pathos, some of the experiences of caring for a spouse with dementia, and in so doing imparts practical and useful advice. It is one person's view of how to manage an increasingly common problem, and explains why a sense of humour, and indeed a sense of the ridiculous, are very necessary attributes for surviving the caring process.

The author was able to devote himself to caring for his wife at home until her death, so the nursing home in the title was never reached. This is far from the common experience, but was made possible by his own determination and capabilities, and the amazing support he received from family, the Alzheimers Association support group, and community services. The author's methods of managing his wife's difficult behaviour are excellent examples of lateral quick thinking. Dealing with an imagined visit from a duchess at 2 am, or the urgent need to plant a tree in the middle of the dining room floor, requires a good imagination and fast footwork.

For general practitioners with a number of older patients, this is a good little book to read and then have on the bookshelf in your surgery for lending to carers. For geriatricians it contains some useful ideas for dealing with some of the more difficult behaviours associated with the dementing process. Although aimed primarily at the lay reader, it contains a lot of useful, and at times entertaining, material for the medical profession. 

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