Resources on Resident and family needs
The following resources have been collected to assist you as you work to change the culture of long-term care, and their inclusion does not imply any endorsement or recommendation by the PEAK-Ed staff or Kansas State University. We hope that you will find some of these resources helpful to your organization regardless of where you are in the Culture Change journey. Please note that web sites change rapidly and in such cases the link may be outdated. Some websites will include automatic forwarding to the new address. If this is not the case, try the more general web site address. Please send information on links which are outdated or do not work or suggestions for additional resources to gerontology@ksu.edu.
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The Kansas Department on Aging site includes information on programs, publications, legislative news, events calendar, links to Kansas Senior Centers and Area Agencies on Aging, Medicare prescription drug program and Senior Health Insurance Counseling as well as information on licensure and evaluation of adult care facilities in Kansas. Their home page is located at http://www.agingkansas.org/. There is also a page devoted to the PEAK award program at http://www.agingkansas.org/kdoa/programs/peak.htm. KDOA is one of the sponsors of the PEAK-ED project.
The Kansas Department of Social & Rehabilitation Services homepage located at http://www.srskansas.org/ has a wide range of information including a Services Index, locations of area SRS offices, links to information on Medicare and Medicaid, publications as well as information on careers. SRS is one of the sponsors of the PEAK-ED project.
American Bar Association (ABA) Commission on Law and Aging (COLA) is dedicated to examining law and policy issues affecting older persons. http://www.abanet.org/aging
Alzheimer’s
and mental health information. Offers free e-newsletter.
http://www.athealth.com/Practitioner/Newsletter/FPN_4_34.html
Brown University Center for Gerontology and Health Care Research.
Facts On Dying: Data on care at the end of life. http://www.chcr.brown.edu/dying/
Central Plains Geriatric Education Center (University of Kansas
Medical
Center): Provides access to interdisciplinary educational modules
(available for CEUs), curriculum resources, calendar of educational opportunities,
and links to useful web sites for consumers, caregivers, and healthcare
professionals. http://coa.kumc.edu/gec
Computer artwork and life stories by Anne Eldredge Harris. A site that suggests a variety of activities. http://www.art.net/Studios/Visual/Anne/home.htm
Culture Change
Now, created by ActionPac, has pictures and stories about
facilities committed to culture change. http://www.culturechangenow.com
The Eden Alternative’s official website: http://www.edenalt.com
Essential
Lifestyle Planning / Learning Community. ELP is a specific structure
for person centered planning that focuses on finding out what is important
to someone, what health, safety, and risk means to the person and to those
who know and care about him/her; and figuring out how someone can be supported
in having a balance between happy and safe while making the best use of
public dollars.
General interest articles: http://www.elpnet.net/elpgeneral.html
Web site: http://www.elpnet.net/index.html
Gardening
for Good is
a national non-profit organization that reaches out to
professionals, individuals and caregivers with ideas and programs that
help older adults continue to enjoy gardening and nature. http://www.gardening4good.org
Guide to non-commercial links to mental health, aging well and eldercare. http://www.helpguide.org
IDEAS Institute
focuses on applied research on the physical, social and
organizational environment for frail and impaired older adults. Resources
include a bibliography and short articles. Articles (March, 2003) include
What is your Building Saying?, Using Color as a Therapeutic Tool, Home
is Where the Heart Is: Designing Home-like Settings, Designing Bathing
Rooms that Comfort, Experiential Learning and Physiological Changes, The
Building as a Therapeutic Intervention, The Secret To Happier Meal Times,
Being There, and The Nursing Home of the Future: Are You Ready? Web site:
http://www.ideasinstitute.org
Pioneer Network. This is the website for the founders
of long-term care culture
change. http://www.pioneernetwork.net
Providence
Mt. St. Vincent has information about resident-directed care:
http://www.providence.org/Long_Term_Care/Mount_St_Vincent/e75Resident.htm
Therapeutic Touch / Nurse Healers-Professional Associates International,
Inc. (NH-PAI) sets standards for the practice and teaching of
Therapeutic Touch and facilitates the exchange of research findings, teaching
strategies, and new developments in this area. http://www.therapeutic-touch.org/
Wellspring Innovative Solutions, Inc., 607 Bronson Road,
Seymour, WI 54165. Mary Ann Kehoe, CEO, Phone: 920-833-1833. http://www.wellspringis.org
Abuse: The Resident's Perspective. Filmed on location, residents give staff their perspective of what it's like to be on the other side of care. They report what they feel is unacceptable from their perspective. (20 minute video). Video Press: http://www.videopress.org
Backseat Bingo. This animated documentary dispels societal preconceptions about romance and older adults. A candid group of 70, 80 and 90 something seniors share personal revelations on their continued need for love and intimacy. A multiple award winner, the video draws its strength from the honesty of the seniors who not only discuss their own mortality and the conscious choice they make to keep going on despite hardships, and the loss of loved ones and friends. A powerful reminder that love and desire (in their various forms) remain an integral part of healty aging and personal well-being. Ideal as a discussion starter to help caregivers and family members broach the often overlooked subject of intimacy among older adults. (6 minutes, DVD). Terra Nova Films: http://www.terranova.org
Bon Appetit! How To Create Meaningful Mealtimes In Long-Term Care. Presents a mealtime program focusing on principles of resident autonomy and person centered care, with attention to identifying the needs of people with dementia. It includes: effects of dementia on communications, behavior and eating, creating dining experiences with less distraction, and preparing and serving food to facilitate residents eating as independently as possible (two 20 minute videos and a manual). Terra Nova Films: http://www.terranova.org
Chronic Anxiety in the Elderly. This program addresses the problem of anxiety in the elderly and the diseases associated with the problem. Interviews with sufferers of Geriatric Anxiety Disorder (GAD), provide insights into the agony of the condition. General anxiety disorders, their symptoms, and physiological manifestations are examined, including chemical imbalance, psychosocial implications, and the emotional impact on the aged brought on by radical societal changes. Caffeine, cigarettes, and alcohol are also discussed. (27 minutes, video) Films Media Group: http://www.films.com
Compassionate
Touch: Benefits And Effects In Long Term Care. This award-winning
video discusses the physical and psychological benefits of therapeutic
massage and attentive touch in residential care (23 minute video). Compassionate
Touch: Benefits And Effects In Alzheimer's Care shows the use of attentive
touch and gentle message in caring for and relating to those who have
Alzheimer's Disease (26 minute video and manual). Produced by Allen Touch
Associates. Terra Nova Films: http://www.terranova.org
Conflict Resolution In The Nursing Home - The Series. I. Conflicts
Involving Residents and Families provides specific suggestions for handling
conflicts between staff and residents, staff and residents' families and
between residents, including interviews with administrators, nurses and
nursing assistants. II. Personnel Conflicts provides ideas to help diffuse
problems before they escalate and to promote cooperative, positive work
environments. (20 and 16 minute videos, available separately or as a set).
Video Press: http://www.videopress.org/
Creating
Successful Dementia Care Settings. Companion videos for Maximizing
Cognitive and Functional Abilities, Minimizing Disruptive Behaviors, and
Enhancing Identity and Sense of Home. Series discusses integrating physical
environment, staff care practices, and residents’ needs into a complementary,
holistic dementia-friendly approach. Information is useful for caring
for all residents, not just those experiencing dementia. Health Professions
Press: http://www.healthpropress.com
Enhancing Self and Sense of Home. What makes a place feel like home? How necessary is this feeling to the smooth operation of a facility for people who are experiencing dementia? Viewers will learn the ways in which personal needs are fulfilled within homelike settings and how a facility can improve resident functioning by making simple adaptations in the physical and caregiving environments. Through individual resident profiles, this video illustrates facility staff using a step-by-step process to identify problem areas, recognize underlying needs that aren’t being met, and then create more supportive, homelike solutions that recognize a resident’s former roles, relationships and routines, that supports the resident’s memory of him-or herself and that gives the resident a greater sense of control or privacy. (33 minutes, video). Health Professions Press: http://www.healthpropress.com
Extended Care & Your Loved One. Having your loved one enter a rehabilitation or healthcare nursing facility can be a difficult experience. Family members report confusion and uncertainty as to what to expect. Many have feelings of guilt and sadness. This video was developed specifically for family members who are looking for answers regarding what to expect when visiting a nursing or healthcare facility. (38 minutes, video). Aquarius Health Care Videos: http://www.aquariusproductions.com/
Geriatric
Nursing Assistant: The Most Important Team Player - The Series.
In The Most Important Eyes, nursing assistants discuss important physical,
emotional and cognitive changes they look for when interacting with residents.
In Becoming An Extended Family Member, nursing assistants discuss knowing
and spending time with each resident, allowing residents to have choices,
encouraging participation in activities, and becoming an advocate for
residents. (20 and 23 minute videos, available separately or as set).
Video Press: http://www.videopress.org/
Harriett's People. In a documentary filmed on location,
nurses, nursing assistants and a physician team to provide the best possible
care during the final months and days to residents in a nursing home (22
minutes). Video Press: http://www.videopress.org/
Maximizing Cognitive and Funcational Abilities. How do
the physical and caregiving environments of a long-term care facility
influence the functioning of its residents with dementia? Viewers will
learn to appreciate the challenges presented by typical residential facilities
when residents have to navigate daily activities with a host of age-related
cognitive and sensory deficits. Deteriorating abilities to maintain independence
are a hallmark of dementia, but they needn’t lead directly to helplessness.
With simple changes to the environment, facility staff can maximize functional
independence and minimize disabilities. Here is a step-by-step process
for identifying barriers and finding respectful, supportive solutions.
Through individual profiles of residents, viewers learn to apply this
sensible problem-solving method to some of the common challenges presented
by toileting, dressing and mealtime activities in long-term care facilities.
The reward for this approach is an enhanced quality of life for residents
and staff alike. (40 minutes, video). Health
Professions Press:
http://www.healthpropress.com
Minimizing Disruptive Behaviors. Professional caregiving staff deals regularly with disruptive behaviors in residents with dementia but often does not have adequate tools to decipher the underlying causes of these behaviors. Through this video, viewers learn to evaluate all aspects of the caregiving environment before working on individualized solutions. Does a behavior result from normal changes of aging or the disease process? Is it caused by distressing environmental stimuli or by some critical unmet need? When and where does it occur? Does it only happen with certain people? When a resident’s whole environment is considered, some surprisingly simple solutions can emerge. This video profiles several residents who are exhibiting common problematic behaviors, including leaving the unit and rummaging. It takes viewers step by step through a problem solving process that can effectively reduce or even eliminate many kinds of disruptive behavior. (21 minutes, video). Health Professions Press: http://www.healthpropress.com
Miss Nora's Store. This video presents the life experiences of elderly individuals living in a rural community, their desire for independence and their respect for tradition. This program reveals the psychosocial and cultural barriers which prevent access to health and social services. Video Press: www.videopress.org/.
More Than
Skin Deep. Set against the backdrop of a nursing home beauty
shop, this video examines issues of self-esteem and aging through the
stories and insights of six nursing home residents. It takes an evocative
look at the connections between living well, aging with dignity, and looking
good. Award-winning filmmaker David Gaynes was inspired to make this film
after a summer working as a transport volunteer at a nursing home. “I
particularly enjoyed taking residents to and from the beauty shop,”
he recalls. “The change in self-esteem from the time I would drop
a person off to the time I would pick the same person up was unmistakable.
For many residents it was the highlight of their day.” Life in a
nursing home can be lonely and disorienting. The beauty shop and its rituals
offer an example of the ways a good long-term care facility can help residents
stay connected to their past lives, to their self-identity, and to each
other. Fanlight Productions: http://www.fanlight.com/
Partners In Care: Care Planning And Care Conferences. This
video, which explains care planning conferences, may be useful for staff,
family members and residents. It includes specific information about the
care planning process, care conferences, the resident’s role in
planning and monitoring his/her own care, and family involvement that
is consistent with the resident's wishes. (20 minute video and presenter’s
guide). Terra Nova Films: http://www.terranova.org
Pioneer Network / CMS Video (2002). Innovations in the Quality of Life. (2 ½ hours). This video is from a satellite broadcast on September 27, 2002. Topics covered include: the Pioneer Network, what is culture change, what does a transformed culture look like, and how regulations and culture change can work together. "I" format care plans and new techniques in bathing are discussed and demonstrated. Video is available at the KDHE library or may be purchased from the Pioneer Network: http://pioneernetwork.org
Recognizing and Responding to Emotions in Persons with Dementia. Often in persons with dementia non-verbal signs are more accurate communications than verbalizations. This video will teach caregivers how to understand and decipher facial expressions, vocal signs and body language in persons with dementia. (22 minutes, video).Terra Nova Films: http://www.terranova.org
Residents Rights Today: Respectful Care in Changing Times. This video presents an overview of residents' rights in the long term care context, including how they can be affected by cultural, ethnic, language and age diversity, more work-flow pressures and outside stressors on staff, why residents’ rights are so important in the culture of a long term care facility, and what staff, residents and family members should know about dealing with concerns and complaints early and effectively (20 minute video and presenter’s guide with in-service lesson plan and various handouts/worksheets). Terra Nova Films: http://www.terranova.org
Restraint-Free Care and the Environment: Scenes from a Swedish Nursing Home. This video describes significant design and practice elements, supporting individualized, and restraint free care in an exemplary long-term care facility in Gothenburg, Sweden. The materials are particularly useful to administrators, staff, advocates, and consultants in long-term care and to students of design, gerontology, and the health professions. (15 minutes, video). University of Pennsylvania School of Nursing: http://www.nursing.upenn.edu/centers/hcgne/gero_tips/RES_Videos.htm
Saying Good-bye:
Being a Professional Caregiver. In this video, nursing staff
share their experiences including accepting families' decisions about
treatment; talking with a person who is terminally ill; knowing how to
facilitate conversation between the resident and the resident’s
family; sharing family concerns with the health care team; minimizing
family stress; helping friends and roommates understand; dealing with
emotional issues of saying good-bye; and finding support at work (20 minutes;
one of three videos in a series). Video Press: http://www.videopress.org/
Seven Days A Week. Filmed over a nine month period, this
video provides a behind the scenes look at a teamwork and resident-centered
approach to providing long term care (30 minutes). Terra Nova Films: http://www.terranova.org
Baumeister, Bryan. Creating Better Lives in Nursing Homes. This booklet is targeted to family audiences and advocates creating "power teams." It is available through Elder Support Counseling. E-mail: Bbaumeister@eldersupport.com.
Brawley, Elizabeth. (1997). Designing for Alzheimer’s Disease: Strategies for Creating Better Care Environments. New York: Wiley & Sons. Includes sections: Aging and Alzheimer’s Disease, Sensory Environment, Special Care Settings, Implementing Effective Interior Design, and The Design Process.
Calkins, M., Marsden,
J., Briller, S., Proffitt, M., & Perez, K. (2001). Creating
Successful Dementia Care Settings (four volume set). Volume 1: Understanding
the Environment through Aging Senses. 2: Maximizing Cognitive and Functional
Abilities. 3: Minimizing Disruptive Behaviors. 4: Enhancing Identity and
Sense of Home. This series discusses how to integrate the physical environment,
staff care practices, and residents’ needs into a complementary,
holistic dementia-friendly approach. 4-Volume Set available from Health
Professions Press. ISBN 1-878812-71-8. Companion videos available.
Greenstein, D., Buettner,
L., & Coffman, C. (2000). Simple Gifts. This 82 page manual provides
instructions for making 16 sensorimotor items for persons with dementia.
The authors report increased family and friend visitation where these
items were provided. Booklet available for a fee through the Cornell Cooperative
Extension publications at http://www.cce.cornell.edu/publications/catalog.html
IDEAS Institute (2001). IDEAS for a better visit. Brief guide to facilitate
successful visits for families, friends and volunteers. Its development
was funded by Mt. Sinai Healthcare Foundation. Available in quantity,
including the option of adding the ordering organization’s logo.
Web site: http://www.ideasinstitute.org
Lustbader, W. (2000). Thoughts on the meaning of frailty. Generations,
23(4), 21-24. Lustbader, one of the founding Pioneer Network members,
describes what it means to be dependent.
Rothert, Gene. (1994).
The Enabling Garden: A Guide to Lifelong Gardening. Dallas: Taylor Publishing.
Rothert manages the Chicago Botanic Garden’s "Learning Garden
for the Disabled" program. Check libraries (out of print).
Schwarz, B., & Brent, R. (Eds.) (1999). Aging, Autonomy, and Architecture:
Advances in Assisted Living. The four parts of this book address issues
that are pertinent to aging and long-term care: idealism and realism,
attributes of place and behaviors of people, provision and consumption
of care, and design: who cares?
This page last updated on 2/16/07