July 17, 2018

American Journal of Alzheimer’s Disease and Other Dementias –

*These articles, DVDs and books are available to members of the Dementia Australia library - if you would like to reserve them please email the Library on library@dementia.org.au

Volume 33, Issue 5, August 2018

Current topics in Research:
Tele-Savvy: An Online Program for Dementia Caregivers - Griffiths, Kovaleva and Higgins et al
This study examined the feasibility and efficacy of Tele-Savvy, an online version of the Savvy Caregiver Program (SCP), a psychoeducation program for caregivers caring for a person with dementia.
The SCP’s main aim is to educate caregivers about dementia and strategies they may implement to create an environment that is calm, provide sufficient amount and quality of stimulation, prevent stimuli that result in problematic behavioral and psychological symptoms of dementia (BPSD), and overall provide optimal quality of life for caregivers and people with dementia.
Methods and results are presented and discussed.
The results point to the feasibility of achieving significant results in caregivers’ well-being and care recipients’ BPSD with a fully online program. Tele-Savvy may be particularly efficacious for caregivers whose care recipients exhibit higher BPSD frequency and are in later dementia stages.

Reliability and Validity Testing of the Quality of Life in Late-Stage Dementia Scale – Resnick, Galik, Kolanowski  et al
This study tested the psychometric properties of the Quality of Life in Late-Stage Dementia (QUALID) Scale using Rasch analysis. The scale includes 11 items.
Methods and results of the study are presented and findings discussed as well as study limitations.
The findings from this study provide some continued support for the reliability and validity of the QUALID scale when used with older adults however item mapping of the QUALID indicated that there were individuals so low in QoL that they could not be differentiated. Easier items are needed to help differentiate these individuals.

Staff Perspectives of Barriers to Access and Delivery of Palliative Care for Persons with Dementia in Long-Term Care
The palliative care philosophy aims to maximize quality of life for the dying individual and is both beneficial for and underused with persons dying with dementia.
The purpose of this study was to investigate the experiences of long-term care staff delivering palliative care to individuals with dementia to determine how care was delivered, to learn which guidelines were used, and whether policies affected the delivery of palliative care.
Findings yielded 3 key themes: confusion, resource shortages, and communication difficulties.
Implications for practice include clarification of terminology surrounding palliative care, education of families about dementia and palliative care, better resource management, and the need to address when palliative care best fits within the dementia process.
related books and DVDs include:

End of life care & letting go ..

- about indicators that the disease has progressed into its final stages and how to provide the most effective comfort care
- how to communicate when there are no words through visual, auditory, and physical signals of connection especially regarding pain!
- about physical changes and the importance of primitive reflexes eg. Swallowing/ feeding  and changes in vision and agitation 
- techniques for a consistent positive physical approach
- about different care approaches, from health promotion to compensatory care
- about giving the person with dementia permission to pass without giving up on them (Letting Go vs. Giving Up)

Advanced Care Skills in Late Stage Dementia

Whether you work in a skilled or hospice care setting, this program is a must-see for anyone who seeks to provide the most comfort, dignity and quality of life to the person living with dementia. 

This program offers step-by-step instructions and hands-on skills for a variety of late stage care needs, all based on Positive ApproachTM techniques to help care partners handle even the trickiest of care tasks and reduce their risk of injury.
• How to calmly get a person out of bed while protecting your back
• How to safely transfer a person from bed to wheelchair
• How to best transfer a person from bed to wheelchair using a SARA lift
• How to bathe and dress a person in bed while protecting their dignity
• How to assist with eating and drinking using the most compassionate care techniques

The end-of-life namaste care program for people with dementia 
This new program reveals simple and practical ways for direct care staff to provide holistic, person-centered care and maintain a human connection.

 Blending nursing care and meaningful activities, the program promotes peaceful and relaxing end-of-life experiences for older adults. Sensory-based practices, like placement in comfortable armchairs, soothing music, and gentle massage, emphasize comfort and pleasure. Personal information is used to individualize the experiences, making them as enjoyable as possible for participants. 

 Step-by-step advice for staffing, budgeting, and marketing a program is included. Detailed information for creating a Namaste Care room is provided, as well as alternative options for facilities with limited space. Plus, real-life vignettes illustrate the program in practice. 

This essential guide for carers, be they professional or friends and relations, provides guidance around a range of concerns associated with end of life. The book tackles this difficult subject in a practical and caring way, showing how appropriate arrangements can be made to ensure the dying person's wishes about death and post-death are carried out. From the practical point of view, the book covers making a Will, making an Advance Directive, donating body tissues and organs, and giving directions for one's own funeral or life celebration. From an emotional point of view the book discusses grief, including anticipatory grief, coping with grief and the importance of grieving.

  • End of Life Care for People with Dementia - eBook
    People with dementia need increasingly specialised support as they approach the end of life, and so too do their families and the professionals who work with them. This book describes not only what can be done to ensure quality of life for those with the illness, but also how best to support those who care for them throughout this difficult period.

Semantic Typicality Effects in Primary Progressive Aphasia – Riley, Barbieri, Weinstraub et al
Prototypical items within a semantic category are processed faster than atypical items within the same category. This typicality effect reflects normal representation and processing of semantic categories and when absent may be reflective of lexical–semantic deficits. We examined typicality effects in individuals with semantic and nonsemantic variants of primary progressive aphasia (PPA; semantic—PPA-S, agrammatic—PPA-G), a neurodegenerative disorder characterized by specific decline in language function, and age-matched controls. Using a semantic category verification task, where participants were asked to decide whether visual or auditory words (category typical, atypical, or nonmembers) belonged within a specified superordinate category, we found a typicality effect (ie, faster response times for typical vs atypical items) for all participant groups. However, participants with more severe PPA-S did not show a typicality effect in either modality. Findings may reflect increased intracategory semantic blurring as the disease progresses and semantic impairment becomes more severe.
related books :
Lost words

Lost Words has more than 290 pictures and their corresponding words. The book is spiral-bound for ease of constant use. There are also a few plastic pockets for keeping photographs in, plus a few pages for personal notes.

There are also many, like some dementia and stroke patients, who have completely lost the ability to speak. For everyone involved, this book can be of great help to both patients and caregivers.

The banana lady – review by one of our carers/library members

My husband has Semantic dementia, which is disease of the brain in the FTD (Frontotemporal dementia) group and “the banana lady” and other stories of curious behaviour and speech is one of the best collection of case studies I have read on this subject. Semantic dementia is quite rare, and I felt very supported by reading this book as the descriptions presented are so similar to what I am experiencing as a Carer.
There has been quite a lot mentioned about language/comprehension problems, but this book also highlights the behaviour issues which can be very challenging indeed.
It is easy to read and there is an excellent chapter on Tips for Caregivers..

  • Where the Light Gets in : Losing My Mother Only to Find Her Again

    Kim’s mother, Linda, was diagnosed with a rare form of dementia that slowly took away her ability to talk, write and eventually recognize people in her own family. "Where the Light Gets In" tells the full story of Linda's illness called primary progressive aphasia from her early-onset diagnosis at the age of 62 through the present day. Kim draws a candid picture of the ways her family reacted for better and worse, and how she, her father and two siblings educated themselves, tried to let go of shame and secrecy, made mistakes, and found unexpected humour and grace. Ultimately the bonds of family were strengthened, and Kim learned ways to love and accept the woman her mother became. With a moving foreword by actor and advocate Michael J. Fox, "Where the Light Gets In" is a heart warming tribute to the often fragile yet unbreakable relationships we have with our mothers."

Intervention Helps Family Caregivers of People with Dementia Attain Own Therapy Goals – Wilz, Weise, Reiter and more
Caregiver intervention studies typically assess whether participants attain general goals (e.g. improved mental/physical health) but not their own individual goals. Goal attainment scaling was used to evaluate whether participants of a telephone intervention based on cognitive behavioral therapy (CBT) attained their personal goals. Treatment compliance and implementation was also evaluated..
Methods and results of the study are presented
The CBT telephone intervention successfully helped participants attain their personal goals.

Influence of an Equine-Assisted Activities Program on Dementia-Specific Quality of Life –Fields, Bruemmer, Gloeckner and Wood
Institutional facilities face challenges providing experiences to residents with dementia that promote participation in meaningful activities. Guided by the Lived Environment Life Quality Model, this study investigated associations between 9 different activity situations—one an equine-assisted activities program (EAAP)—and positive, negative, and neutral behavioral indicators of quality of life (QoL) in 6 residents with dementia who expressed an interest in horses.
Methods and results are presented and discussed.
Data collected adds to the authors’ findings regarding the importance of providing meaningful activities that promote use of abilities and provide environmental support, for enhancing QoL, especially for institutionalized people with dementia.

Technology-Based Behavioral Interventions for Daily Activities and Supported Ambulation in People with Alzheimer’s Disease – Lancioni, Singh, O’Reilly and more
Two studies evaluated technology-based behavioral interventions for promoting daily activities and supported ambulation in people with mild-to-moderate and moderate-to-severe Alzheimer’s disease, respectively.
Methods and Results are presented and discussed.
The technology-based interventions may represent practical means for supporting people with Alzheimer’s disease.

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