HIV and HIV-associated neurocognitive disorders (HAND)

HIV stands for human immunodeficiency virus. This post is about medical conditions associated with HIV, known as HIV-associated neurocognitive disorders (HAND).

YouTube: Understanding HIV-Associated Neurocognitive Disorders (HAND), Alzheimer’s Australia Vic

YouTube: Supporting someone who is living with HIV-Associated Neurocognitive Disorders, Alzheimer’s Australia Vic

Toolkit: HIV-Associated Neurocognitive Disorders (HAND): Toolkit for community care workers, Alzheimer’s Australia Vic, 2014

HIVHANDCommCareThis toolkit is about medical conditions associated with HIV, known as HIV-associated neurocognitive disorders (HAND). HAND affects cognitive (thinking) abilities such as memory, language, attention, concentration, planning, judgement and organisation.

This toolkit is for paid and volunteer workers in community care settings who support people with HIV. The toolkit provides information to increase knowledge and understanding of the cognitive issues of HIV and their impact on self-care. It helps workers identify and address these issues to support better health outcomes for people with HIV and HAND.

Service providers can use this toolkit as a standalone resource. Although this toolkit is mainly about community care, it may help in other settings, such as residential care.

YouTube: Living with HIV-Associated Neurocognitive Disorders, Alzheimer’s Australia Vic

 

HIVHANDFamilyFriendsToolkit: Living with HIV-Associated Neurocognitive Disorders (HAND): Information for people living with HIV and HAND, their partners, families and friends, Alzheimer’s Australia Vic, 2014

This booklet has been produced by Alzheimer’s Australia Vic for people living with HIV and HAND, and their partners, families and friends. It is part of the Dementia and Chronic Conditions Series: HIV-Associated Neurocognitive Disorders Toolkit, which has been developed primarily for community care workers. The information and recommendations it contains are based on independent research, expert opinion and scientific evidence available at the time of writing. The information was acquired and developed from a variety of sources, including but not limited to collaborations with the Burnet Institute and Living Positive Victoria.

Article: Understanding HIV and dementia by Denise Cummins, Australian Journal of Dementia Care, Vol.3, No. 6, December 2014/January 2015, p.28-30

AJDC_Dec14Jan15As the lifespan of people with HIV has increased, so too has the risk of developing HIV-associated dementia. Denise Cummins explains the importance of diagnosis, education and effective management to help people with the condition maintain their independence and quality of life.

Note: should you be interested in this article please request it through our handy form.

This page includes more resources which may be of use in supporting people with HIV and HAND.

webpageHIVDemWebpage: HIV Associated Dementia, Alzheimer’s Australia Vic

This page describes what HIV associated dementia is, it’s causes, the symptoms and how it is diagnosed and treated.

 

Free Community Seminars on Dementia

PrintDuring 2015 there are a number of free community seminars offered by Alzheimer’s Australia which may help you understand dementia better and/or implement simple changes which can make a big difference to a person with dementia?

Note: the seminars posted here are for Victoria, if you are interested in finding out more about Community Seminars for other Australian states, please contact your local Alzheimer’s Australia office.

How dementia-friendly is your home?

Join us to examine some simple and practical design solutions that you can implement in your own home to create a dementia-friendly environment. Learn how elements such as lighting, sound and colour can be effectively used to create a calm and enabling environment. The implementation of which, may make a significant difference to the quality of life and wellbeing for a person living with dementia.

This seminar is suitable for the general community which may also include health professionals, family carers and people with dementia.

Where? Caulfield Park Pavilion, Balaclava Road, Caulfield VIC 3162

When? Wednesday, 15 April 2015

2:45pm – 3:00pm – Registration and refreshment,

3:00pm – 4:00pm – Seminar,

4:00pm – 4:30pm – Question time

Speaker: Terri Preece, Assistant Course Developer, Alzheimer’s Australia Vic

Book online: https://caulfield.eventarc.com/26264

Advances in the early diagnosis of dementia: challenges and opportunities.

The diagnosis of brain disorders such as Alzheimer’s disease is now much more precise. Whilst our knowledge of the dementias and their subtypes has evolved, we can now use developments including brain imaging and neuropsychological testing to “rule in” these specific diagnoses rather than ‘rule out’ other conditions. In a specialist centre or through a specialist in the diagnosis of cognitive disorders, a precise diagnosis can be made in the vast majority of cases.

This seminar is suitable for the general community which may also include health professionals, family carers and anyone with memory concerns.

Where? Yarra Room, Melbourne Town Hall, 90-120 Swanston Street, Melbourne VIC 3000

When? Tuesday, 19 May 2015

5:20pm – 5:40pm       Registration and refreshment

5:40pm – 6:40pm       Seminar

6:40pm – 7:10pm       Question time

Speaker: Associate Professor Michael Woodward, Director – Aged Care, Austin Health

Book online: https://melbourne.eventarc.com/26266

Dementia – Breaking down the Myths

Join us to find out what dementia is and what it is not. This seminar will explain, in simple terms, what dementia is including main causes, especially Alzheimer’s disease, key signs and symptoms and risk factors. It will also explain why changes to behaviour occur. Common myths and misconceptions about dementia will be addressed as well as concerns you might have. In addition, the seminar will explain the importance of seeking a diagnosis if noticing changes and how you can access further information as well as appropriate support and services if and when needed.

This seminar is suitable for the general community which may also include health professionals, family carers and people with dementia.

Where? Warracknabeal Community Centre, Anzac Park, Scott St, Warracknabeal VIC 3393

When? Tuesday, 16 June 2015

2:45pm – 3:00pm – Registration and refreshment,

3:00pm – 4:00pm – Seminar,

4:00pm – 4:30pm – Question time

Speaker: Garrie O’Toole, Facilitator, Alzheimer’s Australia Vic

Book online: https://warracknabeal.eventarc.com/26268

Your Brain Matters

How adopting a healthier lifestyle approach will improve your brain health and may reduce your risk of developing dementia.

This seminar is suitable for the general community which may also include health professionals, family carers and people with dementia.

Where? Quantin Binnah Community Centre, 61 Thames Boulevard, Werribee VIC 3030, Australia

When? Tuesday, 4 August 2015

19:30 – 19:45   Registration and refreshment

19:45 – 20:45   Seminar

20:45 – 21:15   Question time

Speaker: Andrew Italia, Facilitator, Alzheimer’s Australia Vic

Book online: https://werribee.eventarc.com/29119

Bookings close: Tuesday, 28 July 2015

 Your Brain Matters

How adopting a healthier lifestyle approach will improve your brain health and may reduce your risk of developing dementia.

This seminar is suitable for the general community which may also include health professionals, family carers and anyone with memory concerns.

Where? Balla Ball Community Centre, Building 03, Casey Indoor Leisure Complex, 65 Berwick Cranbourne Road, Cranbourne East VIC 3977

When? Thursday, 8 October 2015

10:00 – 10:15   Registration and refreshment

10:15 – 11:15   Seminar

11:15 – 11:45   Question time

Speaker: Emma Dabb, Facilitator, Alzheimer’s Australia Vic

Book online: https://cranbourne.eventarc.com/29120

Bookings close: Thursday, 1 October 2015

Worried About Your Memory

Join us to find out:

how memory works, common memory changes that occur with ageing, health factors that can impact on memory function and when memory difficulties need to be investigated. This session will also provide tips on how to improve your memory.

This seminar is suitable for the general community which may also include health professionals, family carers and people with dementia.

Where? The Wodonga Cube, 118 Hovell Street, Wodonga VIC 3690, Australia

When? Wednesday, 21 October 2015

2:45pm – 3:00pm – Registration and refreshment,

3:00pm – 4:00pm – Seminar,

4:00pm – 4:30pm – Question time

Speaker: Laurel Gourlay, Community Education Coordinator, Alzheimer’s Australia Vic

Book online: https://wodonga.eventarc.com/29444

Bookings close: Wednesday, 14 October 2015

Dementia – Breaking down the Myths

Join us to find out what dementia is and what it is not. This seminar will explain, in simple terms, what dementia is including main causes, especially Alzheimer’s disease, key signs and symptoms and risk factors. It will also explain why changes to behaviour occur. Common myths and misconceptions about dementia will be addressed as well as concerns you might have. In addition, the seminar will explain the importance of seeking a diagnosis if noticing changes and how you can access further information as well as appropriate support and services if and when needed.

This seminar is suitable for the general community which may also include health professionals, family carers and people with dementia.

Where? Neerim District Cricket Club, 17 Neerim East Road, Neerim South VIC 3831

When? Wednesday, 2 December 2015

2:45pm – 3:00pm – Registration and refreshment,

3:00pm – 4:00pm – Seminar,

4:00pm – 4:30pm – Question time

Speaker: Michelle Foster, Facilitator, Alzheimer’s Australia Vic

Book online: https://neerimsouth.eventarc.com/29507

Bookings close: Wednesday, 25 November 2015

 

Frontotemporal Dementia

Frontotemporal dementia (FTD) is the name given to dementia when it is due to progressive damage to the frontal and/or temporal lobes of the brain. It typically affects people at a younger age than Alzheimer’s disease, with symptoms beginning in the 50s or 60s, and sometimes younger. Almost a third of people with FTD have a family history of dementia.

The post today is a collection of resources about frontotemporal dementia. As always, we have offered a range of options, online, physical copies and downloads.

Book: Frontotemporal dementia syndromes, John R Hodges. 2007.

frontotemporal dementia syndromesIn the past decade there have been enormous advances in our understanding of frontotemporal dementia and related syndromes. The impetus for these advances has come from a number of directions including genetic discoveries, new approaches to neuroimaging and improved neuropsychological understanding of the cognitive aspects of the condition. Frontotemporal Dementia Syndromes provides a much needed review of the current status of our knowledge of these syndromes. The book starts with chapters reviewing the history of the condition and describes the presenting clinical, neuropsychiatric and neuropsychological features, before reviewing, in detail, the areas of greatest recent research progress. The book concludes with a chapter proposing a multidisciplinary approach to patient management. Frontotemporal Dementia Syndromes will be essential reading for neurologists, psychologists, psychiatrists and other clinicians interested in cognitive and behavioural disorders, as well as to basic scientists working in the area of neurodegeneration.

Children’s Resource: Frank and Tess – detectives! A children’s activity book about frontotemporal degeneration (FTD), Tiffany Chow  &  Gail Elliot. 2012.

frank and tess - detectives_webFrontotemporal Degeneration also FTD, is an illness that affects the brain. This activity book was created to children, ages 5-9, who are living with parent affected by FTD. Although every person and family experiences FTD in a unique way, this activity book introduces situations that may be familiar to those who are living with FTD. Our goal is to provide valuable, age appropriate information about FTD and offer some helpful coping skills for children. Many of the activities have been specifically designed for the child of a parent with FTD to do together. To reinforce lessons in the book we encourage both parents to engage in the activities.

This is a free, downloadable resource you can access here.

Article:Life Enhancing Activities for Family Caregivers of People With Frontotemporal Dementia, Dowling, Glenna A.; Merrilees, Jennifer; Mastick, Judy, Alzheimer Disease & Associated Disorders, April-June 2014

ADOD28(1)Jan-Mar14Aberrant psychological and behavioral symptoms are common in patients with dementia. These symptoms have negative consequences for family caregivers, causing stress and burden. Frontotemporal dementia (FTD) symptoms cause more pronounced stress and burden on caregivers than those associated with Alzheimer dementia. In this randomized, attention control pilot study, we delivered 5-weekly, one-on-one, positive affect intervention sessions to family caregivers of people with FTD. The program, Life Enhancing Activities for Family Caregivers: LEAF was conducted in-person or by videoconference with caregivers across the United States. Measures of affect, caregiver mood, stress, distress, and caregiver burden were assessed at baseline, end of sessions, and 1 month after completion. Twenty-four caregivers (12 intervention and 12 attention control) participated. At the end of the intervention, scores on positive affect, negative affect, burden, and stress all improved in the intervention compared with the control group. These scores continued to show improvement at the assessment done 1 month after intervention. Subjects were receptive to the skills and the delivery methods. The positive emotion skill-building intervention proved feasible especially in the internet videoconference delivery format. The intervention promoted positive affect and improved psychological outcomes for family caregivers of people with FTD.

Note: if you’re interested in this article please use this form to request it.

Memoir: An evolution of love : life and love with Frontotemporal Dementia, Marie Sykes, Michelle Stafford. 2007.

AnEvolutionOfLoveBob passed away on April 7, 2006, from Frontotemporal Dementia (FTD) at the age of 50.  He struggled mightily with this illness and we struggled with him, gaining an even greater respect for this fine man, as he slowly succumbed to a progressive and irreversible form of dementia.

This book captures the memory and character of “Old Bob”—the Bob we knew before the onset of an illness that robbed him of his talents and capabilities.

It also shows the ways in which we learned to cope with and appreciate the “New Bob”—the Bob we cared for and lived with through the course of the illness.

Website: AFTD Kids and Teens

aftd kids and teens_webWhen a parent is diagnosed with frontotemporal degeneration kids may feel isolated, confused and scared. The AFTD Kids and Teens website has been launched to provide a source of information for kids and teens in affected families. The site includes answers and support for young families faced with raising their children to maturity as one parent regresses. The site has age-appropriate information about FTD and outlines the changes it can cause in family life. There is the opportunity for children to contribute poems, art, essays or videos about their own experiences with FTD.

YouTube: It Is What It Is – Frontotemporal Degeneration: Tragic Loss, Abiding Hope, The Association for Frontotemporal Degeneration. 2013.

An 18-minute documentary that chronicles the lives of four families affected by frontotemporal degeneration (FTD).

Teen resource: What about the kids? Frontotemporal degeneration : information for parents with young children and teens,  The Association for Frontotemporal Degeneration. c2012.

what about the kidsYou are probably reading this book after learning the devastating news that your spouse has frontotemporal degeneration (FTD). You are terribly worried about your partner and how you will lose the love of your life to this devastating, progressive disease. But naturally, you are very concerned about your kids. How will they handle their parent’s illness? Unlike many other dementias, FTD frequently occurs in middle age, meaning there are often children at home. When any parent faces a serious illness, their young children and teens need support and flexibility as well as lots of love and understanding. Few situations can be as stressful on a family as losing a parent to a degenerative brain disease.

FTD is a rare disease with challenging symptoms that can cause considerable impact on the family. As FTD progresses, it creates ever-changing obstacles and unique challenges for families to manage. Meanwhile, children grow and change. Their development heads in the opposite direction as their ill parent’s. What your kids can understand about the disease and what it will mean for their lives will evolve over the years. Children are very perceptive. They will be aware that a family member has changed or is ill. Maintaining an open dialogue with your children will help them cope and create a sense of well-being. Most importantly, taking care of yourself by practicing positive behaviors that decrease your anxiety will set a good example for the kids.

As difficult as it may be for you to admit, at some point you will need to prioritize your child’s wants and needs above your spouse’s. Sometimes, that means turning to an adult day program or a long-term care facility earlier than in other families without children. Do not measure your choices against others’. Trust yourself to make the right choices for your family.

This booklet’s goal is to assist families like yours to navigate successfully FTD’s diagnosis, challenges and changes. Furthermore, this booklet aims to reassure you, the well parent. Children and teens can become resilient and confident adults despite—and often as a result of—adversity. Your strength will help your children feel safe and will show them how people who love each other help one another in tough times. No one welcomes the changes that FTD brings. Yet, hidden within the loss is the potential for unexpected positive growth.

This book is available as a free download here.

Book: Pick’s Disease & Picks Complex, edited by Andrew Kertesz, David G. Munoz. 1998.

Pick's Disease and Complex_webPick’s disease, a form of dementia often accompanied by aphasia has been know for over a century.  The highly complex symptoms assocaited with frontal and temporal lobe deficits have made it difficult to diagnose.  This book presents the clinical and pathological manifestations of Pick’s disease.  It cover clinical depression, neuropathology, biology, and neurogenetic aspects of the disease.  It compares Pick’s and Alzheimer’s, the multiple atrophies and other neurodegenerative diseases.

YouTube: Planning for Hope: Living with Frontotemporal Disease, Produced by Cindy Dilks and Susan Lee Grant.  2010.

Six families share their heart-wrenching stories of perpetual grieving, amidst financial struggles and caring for their loved ones. Sharing another aspect of hope, professionals explore financial and estate planning for FTD victims and their families. Today, there is no single known cause, treatment or cure for FTD. However, the film provides hope for the future as science is moving at a fast pace.

Note: this is an hour-long feature film.

Article: Development and evaluation of a telehealth videoconferenced support group for rural spouses of individuals diagnosed with atypical early-onset dementias, Dementia, May 2014

dementia journalAtypical and early-onset dementias can be particularly problematic for family caregivers, and support groups aimed at memory loss and Alzheimer’s disease are not always helpful. Unfortunately, little has been developed specifically for caregivers of individuals with atypical dementias such as the frontotemporal dementias. Compounding the lack of access to interventions targeted specifically at caregivers of individuals with atypical and early-onset dementias are the unique needs of rural caregivers. Due to the relative infrequency of these particular dementias and the large geographical distances between rural caregivers, technology-facilitation is required for any group-based intervention. This paper describes the development of a secure telehealth videoconferenced support group for rural spouses of individuals with atypical and early-onset dementias. In addition, we provide preliminary evidence of effectiveness and describe a template for future groups based on the key therapeutic aspects of this novel technology-facilitated intervention.

Note: if you’re interested in this article please use this form to request it.

Help Sheet: Frontotemporal Dementia, Alzheimer’s Australia

This Help Sheet describes a type of dementia known as frontotemporal dementia, which has different forms including behavioural-variant frontotemporal dementia, progressive non-fluent aphasia and semantic dementia.
It’s a free download and might be a good resource for friends and family as it’s succinct.

Doll Therapy (Child Representational Therapy)

We often give dolls to young children, particularly girls. We smile indulgently when they nurse and nurture these toys like they would a real infant. It’s fascinating to observe the innate drive to care for those who cannot care for themselves.

Doll therapy, also known as child representational therapy, is a successful form of therapy for supporting people with dementia. It has been found, both anecdotally and clinically, to reduce anxiety and agitation in people with dementia. Indeed, doll therapy can have a truly trans-formative effect for some people, bringing them a sense of purpose, joy and peace.

dementia journalArticle: Doll therapy: A therapeutic means to meet past attachment needs and diminish behaviours of concern in a person living with dementia – a case study approach, L. Bisiani and J. Angus. Dementia 0(0), 2012 1-16

Abstract

The aim of this research study was to examine the impact of the provision of a lifelike baby doll as a therapeutic tool on the behaviour of a person living with dementia. Specifically, this single case study assessed the potential benefits, if any, of the use of doll therapy in reducing behaviours of concern such as anxiety and agitation that may be associated with observed attachment needs of a person living with dementia.

Method: A single case study of a female participant, with moderately advanced Alzheimer’s disease, was the subject of this research. The case study used both qualitative and quantitative research design and methodology in data collection and analysis.

Results: Demonstrated that doll therapy was a positive intervention for the person living with dementia who was the participant in this research. The findings indicate a reduction in behaviours of concern related to the need for attachment and a considerable decline in levels of anxiety and agitation. There was extensive ongoing improvement in social interaction and communication.

Conclusion: This research supports doll therapy as a therapeutic intervention that may be utilized within the ongoing care of some persons with dementia to meet needs for attachment and to reduce behaviours of concern. Despite some controversy on this topic, doll therapy should be considered as a therapeutic approach to further dementia care in light of this positive outcome.

Note: should you be interested in this article please request it through our handy form.

 

DVD: Jack: Quality of life in Dementia Care, Alzheimer’s Australia Tas, 2006Jack

This DVD is a delight to watch. The care and love Jack lavishes on his ‘babies’ is beautiful to behold. Interspersed with commentary from professionals, staff who care for Jack and Jack’s daughter it tells a wonderful story about how the life of a person with dementia was transformed through person-centered care.

 

Clinical Practice Guidelines: Child Representational Therapy in Dementia Care, Dementia Behaviour Advisory Service (DBMAS), June 2009

Child representational therapyThis Australian federal government guidelines document outlines how to implement doll therapy, who would benefit from it, communication between caregivers regarding the therapy and additional special notes and precautions.

 

Article: Growing number of care homes using controversial doll therapy on people with dementia, Sue Learner, 5 March 2014

Doll therapy is being used in a growing number of care homes, yet it is still seen as a controversial intervention despite its benefits. Read article.

 

Article: The use of doll therapy to help improve well-being, Leah Bisani and Jocelyn Angus. Australian Journal of Dementia Care 2(3), June/July 2013

AJDC_coverLeah Bisani and Jocelyn Angus discuss the role of doll therapy in working with people with dementia, and how it can be incorporated into a person’s present reality with dignity and respect.

Note: should you be interested in this article please request it through our handy form.

Article: The Therapeutic Use of Doll Therapy, Dr Daniel Nightingale. Dementia Therapy Care Iss. 2, Fall 2013

From the article:

“On numerous occasions, whilst visiting communities that provide care and support to people living with dementia, I come across ladies who carry with them dolls or cuddly toys.

At first sight, one might think this behavior childlike, a return to infantilism or even totally and completely age inappropriate…”

Note: should you be interested in this article please request it through our handy form.

Catalogue: Sensory Products Summer Catalogue, Summer 2013.

Alzheimer’s Australia SA offers a sales service which includes infant-style dolls for purchase. Refer to the catalogue, page 13 for details on the dolls. Order forms at the end of the catalogue.

Article: Older adults’ views and experiences of doll therapy in residential care homes, H. Alander, T. Prescott, Ian A James. Dementia 13(4), July 2013

dementia journalAbstract

Background and purpose: The mechanisms underlying the success of doll therapy are poorly understood. The aims of this study were to explore how people in care, doll users and non-users, make sense of doll use in their settings.

Methodology: A grounded theory approach was used, recruiting participants from three residential care homes involving four male and 12 female residents. Data collection occurred in two phases; five participants took part in a focus group and later 11 participants were interviewed individually. Eight of the 11 participants had dementia, and four participants were actively using dolls.

Results and conclusion: The results are presented as themes, and sub-themes, consisting of four main categories (intrapersonal features, interpersonal features, behavioural benefits, ethical and moderating factors). This thematic analysis shows that residents generally support the use of dolls, believing that dolls can have a positive impact on some users. The mechanisms by which this impact is achieved are discussed together with the ethical concerns.

Note: should you be interested in this article please request it through our handy form.

Dementia and Culturally and Linguistically Diverse (CALD) Communities

Try to imagine: you’ve spent 50 years of your life in Australia and you are fluent in the language, but increasingly your brain tells you you’re back in the small town you grew up in and you are speaking the first language you learned. Strangely, no one around you can understand and they insist on speaking to you in English, which you don’t understand or speak.

Or this: you’ve lived for many years in Australia but were never particularly fluent in the language of your adopted country. You managed this by relying on the English skills of your children and you were heavily involved with the expatriate community for your social network. Now you’ve been diagnosed with dementia. You don’t believe the doctor and your friends may not think dementia is a real condition, but you have been having trouble with daily tasks that used to be very simple for you. Also, you’ve become lost a few times now in your local neighbourhood…

Dementia is scary, in anyone’s language. For those in our community with dementia who are  not native English speakers and have different perspectives on illness and how support is received, another layer of difficulty may be encountered. The resources featured today focus on culturally and linguistically diverse communities.

Culturally appropriate dementia assessment tools

CALD_websiteCommonly used dementia screening tools may not always be appropriate for those for whom English is a second language. Alzheimer’s Australia has collected information on a range of culturally appropriate dementia assessment tools that can be used with CALD communities. These include the Rowland Universal Dementia Assessment Scale (RUDAS), guidelines developed by National Cross Cultural Dementia Network in collaboration with National Ageing Research Institute (NARI) and culturally sensitive screening tool methodologies.

Note: free hard copies of this test are available from Alzheimer’s Australia Vic library. The kit includes a DVD Guide to Administration and Scoring and a CD of Supplementary Information.

Resource kit: Perceptions of dementia in ethnic communities

Don’t let the ‘vintage’ vibe of this publication put you off, it’s still super-relevant! A resource kit perceptions_dementia_ethnic_communitiesoutlining dementia perceptions in Arabic, Chinese, Croatian, Greek, Italian, Macedonian, Polish, Russian, Serbian, Spanish, Turkish and Vietnamese communities.

Project report: Perceptions of dementia in ethnic communities

perceptions_dementia_proj_reportIn addition to the kit, the Perceptions of dementia in ethnic communities project report provides an overview of some of the key issues that were raised across these communities. This report covers a range of issues which were common across all communities as well as some additional issues that were raised but not included in the resource kit. The information has been compiled following consultation with ethnic and generalist community organisations and community members. Where available, other research has been used to support or reflect different opinions gathered through the community consultations. The report outlines project background, methodology, findings and discussion and conclusion.

 

Help sheets: Dementia information in other languages

Dementia information is available in a number of languages including Arabic, Armenian, Assyrian, Chinese, Croatian, Dutch, Finnish, German, Greek, Hindi, Hungarian, Indonesian, Italian, Japanese, Khmer, Korean, Laotian, Latvian, Macedonian, Malay, Maltese, Polish, Portuguese, Romanian, Russian, Serbian, Spanish, Tagalog, Turkish, Ukrainian and Vietnamese. These can all be downloaded free of charge from our website.

YouTube: It’s not a disgrace…it’s dementia

These videos are available in Spanish, Arabic, Serbian, Ukranian, Cambodian, Croatian, Assyrian, Vietnamese. The version of the video included will play all videos, starting with the Spanish version.

Note: select versions of this video are available from the library as well.

Tip sheets: Dementia risk reduction

your_brain_matters_tips_multilingualDoing what we can to reduce our risk of dementia is important for everyone in the Australian community. For those who would prefer to read about strategies that may reduce dementia risk in a language other than English, Alzheimer’s Australia has produced the Dementia Risk Reduction Bilingual Tip Sheets. The tip sheets are available in the following languages and can be found on our Your Brain Matters website:

Arabic – Assyrian – Chinese – Croation – Dari – Dinka – Dutch – French – German – Greek – Hindi – Indonesian – Italian – Japanese – Korean – Lithuanian – Macedonian – Maltese – Polish – Serbian – Somali – Swahili – Tagalog – Thai – Turkish – Ukrainian – Vietnamese

If you would prefer to talk to someone, you can call the National Dementia Helpline on 1800 100 500. If you need an interpreter you can contact the Helpline through the Telephone Interpreting Service on 131 450.

 

 

 

Person-centred dementia care: helping carers provide the best support possible

As I learn more about dementia I am awe-struck by the love and commitment that shines through the everyday challenges faced by both carers and people with dementia. It takes grace and courage to navigate the labyrinthine paths of dementia, with unexpected rays of warmth and sunshine, prolonged patches of shade and the odd storm.  The devastation that reverberates for the person with dementia, their family and their friends is not to be understated. Keeping the person, not the diagnosis, on the centre stage is diabolically difficult.

The collection we have for you today weaves a picture of the challenges, the triumphs and the love intertwined in person-centred dementia care.

Book: I’m Still Here, J. Zeisel

Im_Still_hereJohn Zeisel is an innovator in the nonpharmacological treatment of Alzheimer’s. He argues that to maintain a quality life, it is essential to recognise which parts of the brain remain intact throughout the course of the disease. He shows how it’s possible to connect with those living with Alzheimer’s by engaging with abilities that don’t diminish over time, such as understanding music, art, facial expressions, touch and the deep need we all have to care for others. In this book John Zeisel outlines his groundbreaking approach and demonstrates how we can offer people with dementia a better quality of life and a connection to others and the world.

Journal: The Journal of Dementia Care, Vol. 21, No. 4, July/August 2013

jdc214The Journal of Dementia Care is a multidisciplinary, bi-monthly journal aimed at all professionals working with people with dementia. It recognises that professional carers working with people with dementia have their own special demands which deserve a specialist publication.

Here’s the contents page from the latest edition, take a look and if you’re interested in any of the articles, check the bottom of the post.

Unlocking diagnosis, p. 12, Jeremy Hughes, chief executive of the Alzheimer’s Society, writes in response to Martin Brunet’s recent article in JDC, and argues that case finding will open the door to treatment and support. A response from Martin Brunet follows.

Creative spaces: a growing project, p. 13, Wendy Brewin enthuses about the many benefits arising from a project which began to develop a new garden in a care home – but grew into something so much more.

Developing a CST service in Norfolk, p. 15, Sarah Purdy and Gemma Ridel describe efforts to develop a consistent provision of Cognitive Stimulation Therapy programmes across one NHS Trust.

A bright future for innovative day support, p. 16, Angela Downing tells the inspiring story of the work involved in developing innovative day activities in Cornwall.

Tom’s Clubs: time together, p. 18, Kayleigh Orr, Julia Botsford and Kaye Efstathiou explain how this joint service for people with dementia and carers has developed.

Improving environments: new tools for the job, p. 20, Abigial Masterson, Sarah Waller and Maxine Grisley explain how a new set of tools to improve care environments has been developed, tested and put to good use.

Good prescribing in dementia: a brief guide, p. 23, Daniel Harwood explains how certain medications prescrived for older people are especially likely to cause troubling side effects for people with dementia.

Religious communities: what can they offer? p. 26, Peter Kevern and Mandy Walker report on the results of a small study which explored the role that the Anglican church community can play in supporting people with dementia.

Eden: how to bring meaning and freedom back into life, p. 29, Care staff tell Rachael Doeg what the Eden Alternative means to them, and UK co-ordinator Jane Burgess explains more.

Counselling in dementia: eliciting memories, p. 32, Mike Fox explains how counsellors can play an important role in helping people with dementia to remember their past.

Short reports, p. 34

  1. Attachment styles and attachment needs in people with dementia and family carers
  2. Predictive validity of the ACE-R and RBANs for the diagnosis of dementia

How do I access these articles?

Journal: The Australian Journal of Dementia Care, Vol 2 No 3, June/July 2013

AJDC_coverThe Australian Journal of Dementia Care is a multidisciplinary journal for all professional staff working with people with dementia, in hospitals, nursing and residential care homes, day units and the community. The journal is committed to improving the quality of care provided for people with dementia, by keeping readers abreast of news and views, research, developments, practice and training issues.

Again, I’ve included the contents page for your review.

Summit highlights needs of younger people with dementia, p. 9, Alzheimer’s Australia CEO Glenn Rees reports on the outcome of the Younger Onset Dementia Summit and what younger people identified as priority areas for action

Photo boards create picture of life, p. 10, An easy-to-make biographical tool to share stories of people with dementia, by Paula Bain

Alive to new possibilities, p.12, Tim Lloyd-Yeates from Alive! in the UK explains how to make best use of iPad technology when facilitating reminiscence sessions with people with dementia

Dementia as a roller-coaster, p.14, In the second of a series of books that have influenced his understanding of dementia, John Killick explains the impact of Christine Bryden’s book Who will I be when I die?

Sensory towels give mealtimes a lift, p.15, Jo Bozin explains how a simple award-winning aromatherapy program has improved the mealtime experience for residents and staff in one Melbourne facility

Strategies to improve the hospital journey, p.16, Geriatrician Clair Langford describes the complexities and challenges of providing hospital care for people with dementia and some of the strategies that can be used to reduce the length of hospital stays, improve the patient journey and, in some cases, avoid admission altogether

Bringing dementia design to acute hospital planning, p.20, Leanne Morton and Carol Callaghan report on the experience of bringing the principles of environmental design for people with dementia to the planning of an acute public hospital in NSW

Home alone with dementia, p.22, Living alone with dementia is not impossible, but carries with it the need for specialised services to support a potentially vulnerable but fiercely independent community. James Baldwin, Kylie Sait and Brendan Moore explain

‘Once you start writing, you remember more’, p.25, Liz Young, Jo Howard and Kate Keetch enthuse about ‘life writing’ work with people with dementia

The use of doll therapy to help improve well-being, p.25, Leah Bisiani and Jocelyn Angus discuss the role of doll therapy in working with people with dementia, and how it can be incorporated into a person’s present reality with dignity and respect

How to achieve effective, intuitive communication, p.31, Trevor Mumby outlines the ways in which we commonly miscommunicate, and shows effective communication methods for working with people with dementia

Sexualities and dementia: resources for professionals, p.34, Based on national and international literature and research by Dr Cindy Jones form Griffith University’s Centre for Health Practice Innovation, the Sexualities and Dementia – Education Resource for Health Professionals guide in the first of it’s kind in Australia.

The view from here: creating momentum for positive change, p.36, Kate Nayton, Elaine Fielding and Elizabeth Beattie describe how they developed a successful program to educate hospital staff about dementia care.

Research news section, p. 38, Includes articles on Montessori-based intervention for people with dementia. Italian-Australians’ experience of dementia caregiving. Carer beliefs about day centres and respite programs. Humour therapy found to reduce agitation in nursing homes. Psychological interventions for carers of people with dementia: a systematic review of quantitative and qualitative evidence.

How do I access these articles?

Book: Alzheimer’s: A Love Story, V. Ulman

I’m reading this book at the moment and it is an utterly truthful personal account of a daughter and sometimes-carer’s experience with Alzheimer’s.  When the last of Vivienne Ulman’s four children left home, she and her husband were poised to enjoy their freedom. Then, her mother’s Alzheimer’s intervened.

alzheimersLoveStoryIn Alzheimer’s: A Love Story, Ulman records with tender lyricism and searing honesty the progress of her mother’s Alzheimer’s, her own grief over the gradual loss of her beloved mother, and the way in which her parents’ enduring love for each other sustained them.

Into this she weaves an account of her family’s history, in particular her father’s rise from farm boy to confidant of prime ministers – achievements made possible by the loving strength of the woman by his side. In a reversal of roles, he amply returned this support.

This inspiring Australian story is a tale for the sandwich generation, squeezed on one side by concern for their children and on the other by anxiety about their parents. It is about illness, grief, and hardship, but it is also about love, determination, and joy.

Book: Connecting Through Music with People with Dementia: A Guide for Caregivers, R. Rio

ConnectingThruMusicFor people with dementia, the world can become a lonely and isolated place. Music has long been a vital instrument in transcending cognitive issues; bringing people together, and allowing a person to live in the moment. This user-friendly book demonstrates how even simple sounds and movements can engage people with dementia, promoting relaxation and enjoyment. All that’s needed to succeed is a love of music, and a desire to gain greater communication and more meaningful interaction with people with dementia. Even those who have lost many social and intellectual capabilities will still enjoy connecting with others through voice and rhythm, and be able to involve themselves in musical dialogue. Suitable for students or entry level professionals in music therapy, nursing, therapeutic recreation and care-related fields, Connecting Through Music with People with Dementia will also appeal to volunteers and family members caring for a person with dementia.

Website: Alzheimer’s Australia Vic Services

Alzheimer’s Australia Vic has a range of services which can be really useful for carers seeking for new ways to connect with a person with dementia.  As well as our National Dementia Helpline, we offer Counselling and Support, Telephone Outreach Programs, Support Groups, Living with Memory Loss Programs, Services for People with Younger Onset Dementia, Memory Lane Cafe’s, Multicultural Services, Education and Training for Families and Carers, Dementia Behavior Management Advisory Service. Check out the webpage for more information on each service.

Book: The 36-hour Day, N. L. Mace and P. V. Rabins

36hrdayThe 36-hour day is the definitive guide for people caring for someone with dementia. The new and updated edition of this best-selling book features thoroughly revised information on the causes of dementia, managing the early stages of dementia, the prevention of dementia, and finding appropriate living arrangements for the person who has dementia when home care is no longer an option.

Remember Me, Mrs V?: Caring for my wife: her Alzheimer’s and others’ stories, T. Valenta

MrsVBigA moving memoir of a husband caring for his wife, Marie, who was diagnosed with Alzheimer’s disease at age 54. Tom describes his struggle of looking after his wife, arranging professional and voluntary in-home support and continuing to work. Ultimately he is forced to seek permanent residential care for Marie. There are thirteen cameos of other carers and how they dealt with a family member who was stricken with Alzheimer’s or other form of dementia. This book will be of great assistance to all men and women caring for a loved one.

The Montessori Approach for people with dementia

RelateMotivateAppreciate-Bklet_blog

New resource from Alzheimer’s Australia, helping you positively connect with people with dementia

2017 Update

2015 Update : There is now a second post on Montessori methods for people with dementia on this blog.  Check it out for more Montessori resources.

Montessori is a topic close to my heart.  Part of my own schooling was Montessori and my children attend a Montessori school.  For me, what really appeals is the dignity and respect which the students are afforded.  The sense of satisfaction and well-deserved pride they derive from mastering an activity is heart-warming to see.  When I discovered that the Montessori principles were also enriching the lives of people with dementia I was really excited.  It’s such a natural extension of this incredibly flexible, carefully-constructed and intelligent educational philosophy.

In more fabulous Montessori-and-dementia news, Dr Cameron Camp PhD and Director of Research, Centre for Applied Research in Dementia, Ohio USA has joined us in Australia to help Alzheimer’s Australia launch “Relate, Motivate, Appreciate: promoting positive interactions with people living with dementia”.  This series of Family Workshops is aimed at family carers and will give carers the knowledge to enable persons living with dementia to be engaged in meaningful activity throughout the day. Workshop participants will receive the recently launched resource RELATE, MOTIVATE, APPRECIATE: Montessori Resource – more about that below.

Resource: RELATE, MOTIVATE, APPRECIATE: An Introduction to Montessori Activities, Alzheimer’s Australia

This introduction to Montessori activities focuses on the elements of a meaningful interaction with someone living with dementia. The booklet outlines why the Montessori approach works, describes the “RELATE, MOTIVATE, APPRECIATE” model and the principles of engagement under this approach. A DVD is included to provide some visuals to further guide the approach.

Resource: RELATE, MOTIVATE, APPRECIATE: A Montessori Resource, Alzheimer’s Australia

RelateMotivateAppreciate-resource_webPeople with dementia are often confronted with what they can no longer do or with the mistakes that they make. Montessori principles are designed to focus on what they can still do. One of the main Montessori principles emphasises using less language, while at the same time promoting non-verbal communication by demonstrating everything that you would like the person to engage with. This book includes 28 activities. The activities are grouped under 5 themes: watching, listening, touching, smelling and tasting. These activities are a starting point that will hopefully serve as inspiration for you to think of activities that the person will enjoy.

YouTube video: Demonstration of Montessori activity, Alzheimer’s Australia

This 7.44 min video shows how to conduct the activity “Feeling different fabrics”.

Book: Montessori-Based Activities for Persons with Dementia: Volume 1, Dr C. Camp

Montessori-based activites vol1This manual is designed to provide people with dementia with cognitive stimulation and opportunities to successfully and meaningfully interact with their physical and social environments on a regular basis. We all have basic needs and many of the problem behaviors associated with dementia can be traced to the inability to meet one or several of these basic human needs. Montessori-Based Activities  for Persons with Dementia: Volume 1 provides stimulating, interesting and challenging activities that can be performed successfully as a means of helping persons with dementia meet such needs.

Book: Montessori-Based Activities for Persons with Dementia: Volume 2, Dr C. Camp

montessori_activities_vol2_blogVolume 2 provides new ideas for activities programming for persons with dementia and other cognitive disorders. There are examples of group activities, as well as methods of transforming individualised programming into small and large group activities. Also guidelines for inter-generational activities which bring young and old together and promote mutual care, transmit cultural values, and enrich the lives of everyone involved.  Activities for men are a focus in this manual.

YouTube video: A Different Visit: Montessori-Based Activities for People with Alzheimer’s Disease, Dr C. Camp and Centre for Applied Research in Dementia

This is an 8-minute presentation by Dr. Cameron Camp of the Center for Applied Research in Dementia created to help families and friends have purposeful and rewarding visits with loved ones who have memory loss due to Alzheimer’s disease or other types of dementia. The presentation centers on the use of Montessori-based activities, which are effective in engaging persons with memory loss.

Book: Montessori Methods for Dementia™: Focusing on the Person & the Prepared Environment, G. Elliot

montessori methods for dementiaThe Montessori Method for Dementia™ is an innovative approach to dementia care that can be adapted for individuals, for groups and as a philosophy of care. The focus is on “doing”. Since programming is created based on individual needs, strengths, interests and abilities, the activities are meaningful to the individuals, thus affording them the opportunity to enjoy an enriched quality of life by remaining purposefully and meaningfully engaged in daily roles, routines and activities of daily living.

Other links

If you’re keen to here’s some links to information on the

Montessori Philosophy, Montessori Australia

Maria Montessori biography, Montessori Australia

UPDATE October 2015: There is now a second post on Montessori methods for people with dementia on this blog.  Check it out for more Montessori resources.