In the Spotlight - continued
TimeSlips: New Interactive Website Promotes Storytelling for People with Memory Loss and Their Caregivers
A new interactive program was launched in September that helps facilitates storytelling between caregivers and their loved ones. TimeSlips is an improvisational storytelling with an approach focused on a person using their imagination instead of feeling pressure to remember. The program was originally designed to support growth and learning with people with cognitive disabilities such as dementia and for their caregivers, but it can be used by anyone to read, write and share stories with family and friends.The TimeSlips website features a library of images and questions that help prompt storytelling.
The focus on imagination is intended to create a type of "laboratory" where people who have difficulty with communication can experiment with sounds, gestures, word fragments, and whole sentences; make meaning; and have fun at the same time. The creators of the site suggest that TimeSlips works best with people in the mid to late stages of memory loss who are the most open to language experimentation.
Anne Basting, Ph.D., officially launched the new TimeSlips.org during a keynote presentation at the National Adult Day Services Association (NADSA) conference in September in Milwaukee, WI. Dr. Basting presented the benefits of storytelling to long term care in general, and demonstrated the features of the TimeSlips storytelling software. Users can tell stories themselves, or invite friends to tell stories with them either in person or online. Anne Basting is the Director of UWM's Center on Age & Community and Assoc. and Professor of Theatre at the Peck School of the Arts. Basting is the author of several articles and two books, including Forget Memory: Creating Betting Lives for People with Dementia (2009). She is an internationally recognized keynote speaker on creativity and aging.
TimeSlips was founded in 1996 by Bastings and is based at the University of Wisconsin-Milwaukee's Center on Age & Community. The goals of the TimeSlips Project are to: (1) inspire people with dementia to hone and share the gifts of their imaginations; (2) inspire others to see beyond loss to recognize the strengths of people with dementia; and (3) improve the quality of life of people with dementia and those who care for them. To achieve these goals, the TimeSlips Project offers training, certification, and consulting for facilitators and organizations; and acts as a resource for those dedicated to transforming dementia care through creative engagement.
Research studies focused on TimeSlips (Fritsch, Jung, Grant, Lang, Montgomery & Basting, 2009; Philips, Reid-Arndt & Youngju, 2010) found that it had positive effects on both the person with dementia and also on staff at a nursing home providing care for people with dementia. TimeSlips offers an informative online training as well as in-person training workshops in addition to facility and organization certification. TimeSlips staff also have extensive videos of TimeSlips in action as part of the online training. Their certified facilities are throughout the United States and Europe.
In a recent interview, Anne Basting, Executive Director, responded to questions about TimeSlips:
What are the historical context and mission of the TimeSlips Project?
In 1996, I was researching the power of theatre/performance for older adults. Playing a new role literally transformed their experience of aging. I wondered whether people with dementia could benefit from the transformative power of theatre. I tried many reminscience-based exercises (that is the natural impulse in dementia), but found that when I shifted to imagination, the group I was working with just took off. It was a joy to be part of. It not only transformed them (via the role of storyteller), but also the staff, who were astounded by what we were doing. Our mission is simply to improve the quality of life for families with dementia.The specific goals of the TimeSlips Project are to: (1) inspire people with dementia to hone and share the gifts of their imaginations; (2) inspire others to see beyond loss to recognize the strengths of people with dementia; and (3) improve the quality of life of people with dementia and those who care for them. To achieve these goals, the TimeSlips Project offers training, certification, and consulting for facilitators and organizations; and acts as a resource for those dedicated to transforming dementia care through creative engagement.
What are the key issues that the TimeSlips Project is addressing currently?
With our new website, we hope to bring the power of imagination to people with dementia wherever they live. So many of the effective programs in creative engagement are offered in care facilities. It is difficult to bring them to people at home, or to use them to provide continuity between care settings. With the "collaborate" feature on the new website, we hope we can help families/care partners connect across the miles to do something joyful together.
What might be a typical caregiver's situation and how would her or his specific needs be addressed by using this site/service?
Say Sarah is living at home in Oregon with her husband, Peter, who has dementia. Together they can use the website at home to tell stories. They can "collaborate" with their daughter, Jenny, who lives in San Francisco. They can also "collaborate" with the day center that Peter attends three days a week. They can share the stories they tell via email with grandchildren and friends. Those friends smile when they read the stories - and maybe, just maybe, come visit because they see that there is a way to communicate and reach each other, even in the advanced stages.
What has been the impact of TimeSlips on the audience or community it is serving to date?
We have been lucky to have some solid research wrapped around the method. One study found that the method improved mood and communication for people with dementia. Another study of 20 nursing home units found that the 10 units on which TimeSlips was practiced, there was significantly more and better engagement between staff and residents. In general, we think what is happening is that the method, with its intensive listening and affirming the storytellers expression, is modeling how to reach each other across the challenges of cognitive disabilities. And of course the fact that it is fun is helpful, too!
Are there any future plans for TimeSlips?
We hope that the website can keep offering new "prompts" to spark creativity. We hope to expand our outreach to schools, so that students (aka volunteers or grandchildren) can use the tool for positive intergenerational experiences. We recently completed another project that assembled lots of these creative prompts into one long, extended engagement that an entire care facility participated in (The Penelope Project). We would like to continue this work so families have a big thoughtful project they can be part of, rather than just a single storytelling event. We would love to continue to use the method as a way to create bridges between families and care staff as people transition through care settings. There is never a shortage of new directions in this field!
How can readers obtain more information?
Anyone with a question or comment can reach us through the contact page as we would love to hear from you! Contact: Anne Basting, Founder and Director, The Timeslips Project, The Center on Age & Community, University of Wisconsin‐Milwaukee, P. O. Box 413, Milwaukee, WI 53201. Phone: (414) 229-2740; Fax: (414) 229-2713. Our website is: http://www.timeslips.org/
The Society for Social Work Leadership in Health Care will host a conference, Social Workers in Health Care: Navigating our Troubled Water in San Francisco, CA. Sessions will encompass the timely and practical applications of health care social work in academia, acute care, behavioral health, case management, chronic care, community practice, pediatrics, home health, hospice, long term care, rehabilitation and more.
This conference will provide tools for social work leaders and clinicians to thrive despite the current uncertain climate. To review the schedule of events, course descriptions, continuing education information, special events and everything else the meeting has to offer, download the 2011 Annual Conference brochure from the Society’s website.
National Memory Screening Day is November 27, 2011. It provides free, confidential memory screenings to individuals concerned about memory loss with the objective of early detection and intervention. Memory screenings are a significant first step toward finding out if a person may have a memory problem. Memory problems could be caused by Alzheimer’s disease or other medical conditions.
The event encourages Americans to participate by offering screenings at no charge and in convenient locations in communities across the nation. National Memory Screening Day also provides a valuable opportunity to learn more about healthy lifestyle choices for successful aging. Visit www.afascreenings.org for more information.
Research & Practice - continued
Administration on Aging Announces Grants to Enhance State Alzheimer’s Services
Four states are to develop model systems for delivering services to people with disabilities. Ohio, New York, Georgia and Minnesota received funding to help older adults and people with disabilities remain independent and healthy in their communities. Assistant Secretary for Aging Kathy Greenlee announced on September 28, 2011 that the four states will use a total of $12.8 million in grants to accelerate development of comprehensive, integrated systems that can serve as models for other states. The models will demonstrate how to enhance state systems to provide consumers, including individuals with Alzheimer’s disease or another dementia, or their caregivers with simplified, streamlined access to needed services. The coordinated approaches developed with this funding will support those eligible who need help at home, with energy assistance, and caregiver training. . . .
The grants will also strengthen access to all information on support services for consumers, regardless of the source of funding.
"It is fitting that we announce these awards during World Alzheimer’s Month. Our home and community-based service system must be responsive to the unique needs of all, including those with Alzheimer’s disease," said Assistant Secretary Greenlee. "We are responding to families who tell us that they want easy access to appropriate services and supports, both public and private, that can help older adults and people with disabilities remain independent in the community."
States are working with Area Agencies on Aging, Centers for Independent Living, Alzheimer’s associations, health departments, and community-based organizations to increase access to evidence-based caregiver support programs and health and prevention programs. A goal of this effort is to identify persons with early signs of Alzheimer’s disease and related disorders so their needs and the needs of their caregivers are addressed. The Administration on Aging is awarding each grantee a fully funded three-year cooperative agreement. States must also ensure access to a comprehensive set of dementia-capable, high-quality services that are evidence-based and promote community living, health and independence for older adults, individuals with disabilities, and family caregivers. These long-term services and supports will ensure maximum choice for individuals with Alzheimer’s disease and their family caregivers including options counseling, streamlined eligibility determinations, evidenced-based health promotion programs, and care coordination for those transitioning from hospitals or nursing facilities to home. For more information visit the Administration on Aging web site.
FCA Recognized as High-Impact Nonprofit Organization
This month a group of 88 experts in a study supported by Philanthropedia (at Guidestar), medal for top nonprofit a nonprofit organization that helps people make smarter donation choices, identified Family Caregiver Alliance (FCA) as one of 13 high-impact nonprofit organizations working in the field of aging in the United States.
Some of the reviews experts had about FCA's impact were:
"FCA has raised awareness about the concerns of family caregiving at the local, state, and national levels. It has led the field in creating services, educating families, policymakers, professionals and others about the issue, articulating policy needs, and identifying the need for research, services, and public policy..."
"They are a wonderful resource in terms of national statistics on caregiving and the impact of caregiving on families. They also fund and recognize unique caregiving support programs."
"They have had a significant impact on adddressing the needs of family caregivers and are one of the first in field to do so. They are data-driven and have a strong advocacy agenda."
Philanthropedia (at GuideStar) is a nonprofit organization which helps people make smarter donation choices by connecting them with some of the highest impact nonprofits for a particular cause. They differ from other online rating or donation sites by using experts to identify high-impact nonprofits.
All the information collected from the research is available on Philanthropedia's website and will be available shortly on GuideStar Take Action's website. To read more about what experts in the field had to say about Family Caregiver Alliance (FCA), click on the Expert Reviews section at the Philanthrodedia web site.
Assistive Technology and the Family Caregiver: Survey Seeks Caregiver Input
The Family Caregiver Alliance (FCA) has been participating in an advisory group for a national effort to find ways of putting assistive technologies in the hands and homes of families caring for relatives or friends with disabling conditions. To this end, FCA is sponsoring a brief survey seeking caregiver input: experiences, thoughts, and attitudes as they relate to technologies and home modification services that might help the caregiver or the respective family member.
Over the years we have found that while there may be equipment or devices that may reduce physical demands of caregiving, families are often unaware that they exist, where to find them and how to use assistive technologies. The answer may lie with better training with all levels of professionals in this area, more consumer information about these devices, provision of consumer training programs around assistive technologies and improved ways for families to access the products (including the issue of cost).
Organizations should send the Survey of Family Caregivers on Technology and Changes to the Home to family caregivers that they are associated with. Responses will let FCA and provider organizations know what family caregivers want and need most so we can customize our programs and services. You can take the survey now, or if you have questions, you can email firstname.lastname@example.org with questions.
Lifespan Respite News - continued
Getting to Know the Lifespan Respite State Grantees and Stakeholders
The US Administration on Aging (AoA) has now funded 30 state Lifespan Respite Grantees, with six new Grantees added in 2011. This issue will highlight the Pennsylvania State Grantee.
Lead Agency and Primary Collaborators: The Pennsylvania Department of Aging was awarded a Lifespan Respite grant in 2010. They began their second year of funding September of 2011. The lead agency is working in concert with the Pennsylvania Respite Coalition (PaLRC), the network of Aging and Disability Resource Centers (ADRCs) within the state, the Departments of Public Welfare and Health, and key community-based organizations to carry out the activities of the grant.
Together the above organizations aim to establish a statewide lifespan respite care system. The goal of the program is to improve the coordination of, and access to, respite services across all ages and disabilities in the state. . . .
They have established a statewide Lifespan Respite Care Advisory Council to lead, support and monitor the development of a lifespan respite care system for Pennsylvania. The Council is co-chaired by representatives from both the PaLRC and the ADRC network. One of the aims of the grant is to improve coordination among state and local agencies and organizations that provide and/or fund respite services and those that provide information and referral to families. They also want to increase awareness of lifespan respite needs and services among caregivers and providers. As a result of these activities they expect to achieve improved statewide systems of coordination of respite services, improved access to respite services for caregivers, and increased awareness of respite needs and use of respite services.
In addition, they will be creating a comprehensive and culturally effective website for lifespan respite resources which will include training resources and opportunities. The Advisory Council will create a written action plan that will present recommendations for efforts to sustain the lifespan respite care system. They also plan to prepare a report of the evaluation results.
State Coalition Role
The PaLRC is assisting in advocating and increasing public awareness for respite options. They assist the Department of Aging in disseminating information about the availability of the Lifespan Respite website and they work with the ADRCs to provide the information and referral information about Lifespan Respite programs and resources. The PaLRC is working with the Department of Aging to make determinations for membership, representing key groups, in the Advisory Council. Together with the ADRC network they co-chair the Lifespan Respite Advisory Council.
Aging and Disability Resource Center Role
The ADRC network, along with the PaLRC and others, is assisting in identifying respite providers throughout the life of the grant. They will continually share this information via the website and the information and referral resources. They want to make sure all providers have accurate and up to date information for listing on the ARCH National Respite Locator Service. Any agency across the state, across disabilities and across ages that is involved in respite has to be connected to families and individuals via the ADRC.
The PA State Lead Contact:
New ARCH Publications
National Respite Guidelines
The guidelines provide a summary of guiding principles addressing quality indicators for all respite models and services. They can act as a checklist for providers of respite to review as they address respite service delivery issues. The guidelines are intended to be used by respite provider programs, individual providers, health care providers, human services agencies (i.e., disability, health, aging, and children), state agencies, planning groups, stakeholders, and others who are interested in advancing quality respite. State organizations can use the guidelines for planning future respite systems and to provide consultation and technical assistance for local and regional agencies and programs. . . .
Local organizations and agencies can use the guidelines as they assess, plan, develop, and enhance or expand specific respite programs and services in their community. Some sections of the guidelines may be helpful when family caregivers directly recruit and hire their own respite providers. For more information on how to assess and use respite, consumers, family caregivers and care recipients may want to refer to the checklists and additional information included in the ABCs of Respite: A Consumer Guide for Family Caregivers.
The guidelines are not intended to be standards or licensing requirements. As the title suggests, they are guidelines or guiding principles for respite programs to follow or consider. The current revisions to the guidelines have incorporated language and best practices to effectively include individuals with special needs across the lifespan. Download the National Respite Guidelines for free at the ARCH Lifespan Respite Grantee/Partner publications site.
Fact Sheet 57: Respite for Caregivers of Adults with Mental Health Disorders
Because of the unique nature of their respite needs, this fact sheet focuses on respite for family caregivers of individuals with mental health issues who are between the ages of 18 and 60. Mental health related conditions, such as serious emotional disturbance among children and youth, and Alzheimer’s and other dementias, are addressed elsewhere (ARCH Fact Sheet 34, "Respite for Families with Children Experiencing a Serious Emotional Disturbance;" ARCH Fact Sheet 55, "Respite for Persons with Alzheimer’s Disease or Related Dementia").
Fact sheet 57 is meant to assist state agencies, Lifespan Respite grantees and their collaborators, and respite providers by increasing their understanding of the unique needs of this population and their family caregivers. Such insight and direction will help State Lifespan Respite programs and others develop strategies to increase respite quality, access, and capacity for this population through partnerships with community-based services and enhanced provider recruitment and training efforts. It is also intended to offer resources for family caregivers seeking to expand respite opportunities for themselves and others. Download a free copy from archrespite.org.
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