June 21, 2018
Australian Journal of Dementia Care - In this issue: June/July 2018
*These articles, DVDs and books are available to members of dementia Australia library - if you would like to reserve them please email the Library on email@example.com
Australian Journal of Dementia Care
Vol 7 No 3 Jun/July 2018
LAUGH: Co-design for people living with advanced dementia Pg 22 - 26
Researchers in Australia and the UK have been working with people living with advanced dementia to develop/create a collection of sensory objects to engage, comfort and bring pleasure and fun to their lives.
As part of the process, a toolkit to support people putting together such sensory objects was created: Compassionate design: how to design for advanced dementia. This is available from the LAUGH website: www.laughproject.info/home-2/toolkit-for-designers/ .
· Project updates and viewpoints:
Mooving and Grooving Pg 10
The article examines connections – as people lose the power to communicate verbally – it examines “widespread good practice” and “enriching lives” …p. 20-21
Alive inside: A story of music & memory [DVD]
Alive Inside is a joyous cinematic exploration of music's capacity to reawaken our souls and uncover the deepest parts of our humanity. Filmmaker Michael Rossato-Bennett chronicles the astonishing experiences of individuals around the country who have been revitalized and awakened by the simple act of listening to the music of their youth.
· Research Focus:
Understanding the barriers facing BAME communities Pg 31
Technology focus in Budget dementia Funding Pg 5
This year’s federal budget included an injection of $5.3 million to improve care for people living with dementia, with an emphasis on using innovative technology. A number of key players respond including Maree McCAbe, Dementia Australia’s CEO.
Study reveals keys to quality of life Pg 5
A University of Exeter study, published in Psychological Medicine in May has identified factors that can be targeted to support quality of life for people with dementia. For more information, visit www.idealproject.org.au
TBI and dementia link Pg 5
Keeping Love Alive as Memories Fade
Authors: Deborah Barr, MA, Edward G. Shaw, MD, Gary Chapman, PhD
Reviewer: Paul Williams
Keeping Love Alive as Memories Fade is a practical guide to help families and friends sustain their relationship with a loved one living with dementia.
The need for such a book stems from a person with dementia’s dependence on others to care for their personal needs and progressive loss of verbal ability. Both events can lead to a breakdown in the relationship the between the family and their loved one.
However, a person with dementia, like any other person, has innate needs for comfort, social relationships, and engaging in activities they enjoy.
Adapted from Gary Chapman’s book The 5 Love Languages® - The Secrets to Love that Lasts, Chapman specifies five types of interaction that enhance a person with dementia’s quality of life:
· Words of Affirmation that boost the person with dementia’s sense of identity and of being valued.
· Quality Time using good listening skills and sensitivity to the person with dementia’s needs. It also includes helping them engage in meaningful activities suited to their current stage of dementia.
· Receiving Gifts means actions that lighten up the day. For example, remembering anniversaries, or simply a chocolate treat.
· Acts of Service will vary depending on the person’s stage of dementia. In the mid and late stages of dementia acts of service may include helping with meals, dressing, personal hygiene, and medication.
· Physical Touch, such as holding hands, or friendly hugs, to give a person a sense of identity and attachment.
Chapman notes that social upbringing and culture drive how we interact with others. Thus, love language works best when two people know each other’s social sensitivities. He provides useful self-tests to help the reader match their interactions to their loved one’s social preferences.
The book unravels nuances of the word “love” and its usage in dementia care, for example:
· The apt Hebrew word hesed for a love that “intervenes on behalf of loved ones and comes to their rescue”.
· If there has been a strained relationship, how to discern emotional love from practical love for person in distress. In Gary’s words “to distinguish between love as a feeling and love as an action.”
Other topics include:
· Love language “do’s and don’ts” during the stages of dementia
· Detailed examples of applying love language
Keeping Love Alive as Memories Fade reflects Deborah Barr’s gift as a health educator. She brings family carers the real-life experience of Dr Edward Shaw’s care of his wife Rebecca, and Gary Chapman’s application of love language to dementia care.
The book shows how love language benefits the person with dementia and the carer alike, for example:
· The person with dementia will feel they are valued and their needs are respected
· Reduces the effects of behavioural problems
· Avoids the use of anti-psychotic medications
· A carer will see the positive effects of their care in the eyes of their loved one
Of course, love language is not the only concern for family carers, and the authors list additional resources to cover other areas of dementia care.
Keeping Love Alive as Memories Fade fills a major gap in dementia care literature and will help family carers learn how to sustain their relationship with a loved one with dementia.
To borrow or reserve this item please email NSW.Library@dementia.org.au
or download from our overdrive link
A Vanishing Mind - A Journey with Dementia
Author: Stan Doenau
Reviewer: Paul Williams
From August 2008, Stan Doenau cared for his wife Kathryne who lived with dementia for four years until she passed away.
In his introduction to A Vanishing Mind - A Journey with Dementia, Stan accurately points out that family carers have no idea of what to expect after their loved one receives a diagnosis of dementia. Nor do many health professionals and the general community understand a person’s experience of the dementia journey. Stan wrote the book in the hope that all in society will gain some understanding of the devastating impact of person’s experience of dementia.
Having maintained a detailed record of Kathryne’s progressive symptoms of dementia, he presents a chronology and personal narrative of her experiences of dementia up until the time of her death.
Beginning in August 2008, Kathryne’s symptoms were a misuse of words and repeated questioning. After CT and MRI scans, Kathryne’s GP referred her to a neurologist who diagnosed that she had suffered a slight stroke, (p4). Following a positive cardiologist report the specialist advised that, with time, she should recover most of her speech faculties.
Despite difficulties, Kathryne still enjoyed an active social life with Stan and her friends. Hence, the specialist scheduled a check-up for Kathryne at the end of 2009.
In the following months Stan noticed that, while Kathryne’s misuse of words was decreasing, short and long-term memory problems were increasing. By the time of the 2009 check-up, Kathryne was having difficulty identifying or finding household items.
However, her neurologist expressed satisfaction with her progress and scheduled the next check-up for the end of 2010, (p39). However, this left Stan confused. He had expected the neurologist to comment on Kathryne’s emerging signs of dementia.
His concerns increased when his records for 2010 showed a dramatic change in Kathryne’s symptoms. They included increased memory loss, language difficulties, not remembering Stan or friends, wandering, weeping, delusions, and aggressive behaviours, (pp 73-82).
It is not clear whether Kathryne attended the scheduled check-up at the end of 2010. Instead, in June 2011, Stan asked Kathryne’s GP for a referral to a geriatrician. Again, there was no diagnosis of dementia, but the specialist made a referral to a speech pathologist, (104).
From there until August 2012, Kathryne’s symptoms increased until she went into palliative care at a nursing home. A specialist informed Stan that while a CT scan had shown no further strokes, the cause of death was likely to be a more a deep-seated obstruction of blood to the brain, (p127).
Although Stan suggested to both specialists his concerns about Kathryne’s signs of dementia, they limited their diagnosis to a mild stroke. They further advised that her condition would improve if no further strokes occurred.
From Stan’s evidence, it not possible to judge whether the specialists’ sole diagnosis of stroke was to give hope to Stan that Kathryne could recover from her speech problems.
However, if they were aware that stroke is a risk factor that leads to vascular dementia, the specialists could have helped Stan gain early support from the Alzheimer’s Australia Living with Dementia Program, or the National Dementia Helpline.
The book shows Stan cared diligently for Kathryne at home up until the last weeks of her life. His book reflects a sincere attempt to explain the dementia experience to others. It will be up to the readers to judge whether it improves their understanding of dementia.
· Resource Reviews : Pg 37 - 39
Include books, brochures, education and training packages, cards, webinars and upcoming events.
Dementia Australia has released two new resources focussed on younger onset dementia available for download at https://bit.ly/2rvHX9G: an online training module called Understanding younger onset dementia, , and a brochure called Support pathways for people with younger onset dementia.
Dementia Australia has also published a booklet aimed at people from Aboriginal and Torres Sraight Islander communities: Family friends and community.