Caregiving and Quality of Care Resources


Online resources


Taking Care of Yourself: A Guide for Family Caregivers is offered by CARIE.


ALS Association - Greater Philadelphia Chapter
Persons with ALS or their family members and caregivers register to participate in services which includes local resource groups, education, respite and referrals.Call: 215-643-5434


Alzheimer's Association
Provides information and services through its Helpline. Support group, family caregiver education seminars, safe return programs for wanderers, newsletters and speaker's bureau to person's with Alzheimer's disease or related disorder and their caregivers.


ALZwell Caregiver Support
ALZwell is dedicated to helping dementia caregivers to find understanding, wisdom, and support offering information on dementia care and other aspects of eldercare, a network of support groups and links to other resources.


Association for Frontotemporal Dementias (AFTD)
The AFTD is a nationwide non-profit organization whose mission is to promote and fund research into finding the cause and cure for the frontotemporal dementias; to provide information, education, and support to persons diagnosed with FTD and their families and caregivers; to educate physicians and allied health professionals about FTD. P.O. Box 7191, St. David's, PA 19087-7191


Caregiver Survival Resources
Provides help in coping with the demands of caregiving.


Caregiving.com
A national online support haven since 1996, helps persons caring for aging relatives. The site features the faces of caregiving, sharing stories from the caregiving trenches, and focuses on practical solutions for caregiving conundrums. Web site visitors can enjoy weekly tips, an advice column and ten online support groups.


CARIE (Center for Advocacy, Rights and Interests of the Elderly)
Provides free telephone consultation, which provides options counseling and problem resolution services to the older person, their caregivers and professionals. Call: 215-545-5728


CARES (CAregivers REducing Stress)
CARES is a new program, funded primarily by the Pew Foundation, for anyone caring for an older family member or friend in Philadelphia. Through Lutheran Settlement House (in Fishtown), we aim to provide support for caregivers who are prone to specific kinds of stress and health risks in their role. The program offers: individual and family counseling, support groups, connections to resources, and a monthly lecture series, all for free to low-income families! To be eligible, you must be caring for someone 65 or older and not be paid for your services. We are able to make house calls for individuals who are unable to leave their home without respite care. For more information or to enroll please contact: Virginia Harr at 215-426-8610 x 207, vharr@lutheransettlement.org, 1340 Frankford Ave., Philadelphia, PA 19103


Children of Aging Parents (CAPS)
A non-profit organization which establishes and facilitates caregiver support groups, provides educational outreach and information on available services to assist caregivers. Call: 1-800-227-7294


Circle of Care
Cirlce of Care explores how the arts and humanities can improve communication and personalize healthcare for patients, families and healthcare professionals.


Eldercare Locator
A nationwide service available toll free or on the web which helps older adults and their caregivers find local services for seniors. The toll free Eldercare Locator service operates Monday through Friday, 9:00AM to 8:00PM, Eastern Time and can be reached at 800-677-1116 or the Eldercare Locator can be accessed via the internet.


Episcopal Community Services
225 South 3rd Street, Philadelphia, PA 19106. Call: 215-351-1400 Episcopal Community Services, ECS offers home health care as well as pastoral care training and support. ECS Home Care provides certified home health aides for low-income homebound elderly. ECS home health aides provide personal care, and caregiver respite support. ECS also offers pastoral training and support in hospitals, nursing homes and churches in Bucks, Chester, Delaware, Montgomery, and Philadelphia Counties. ECS also publishes a Prayer flyer for those who are sick.


Family Caregiver Alliance, National Center on Caregiving
Call 1-800-445-8106 Works to advance the development of high quality cost effective policies and programs for caregivers in every state of the country. The Family Caregiver Alliance site has specialized information on Alzheimer's disease, stroke, traumatic brain injury, Parkinson's disease, ALS and other disorders. Fact sheets regarding various diseases and caregiving information can be found at: www.caregiver.org Some materials are available in Spanish and Chinese.


The Home Care Network
The website for The Home Care Network includes an audio and animated section on skills for home caregiving.


Life Assess Program
Holy Redeemer LifeAssess is the first program of its kind in the nation to be certified by the Joint Commission on the Accreditation of Healthcare Organizations (JCAHO). The LifeAssess program -- a collaborative effort of Holy Redeemer's two home health agencies is a comprehensive assessment and rehabilitation program for people age 85 that seeks to identify and offer intervention for the four most common geriatric syndromes (falls risk, incontinence, depression and dementia). For more information on the Holy Redeemer LifeAssess program, please call 1-800-818-4747.


Lung Cancer Alliance
The only national non-profit organization dedicated solely to providing support and advocacy for people living with or at risk for the disease.


National Alliance for Caregiving
Supports family caregivers through resource guides and information available online or in print. Website is home of the AXA Foundation Family Resource Connection, a searchable database of books, videos, websites, etc. for caregivers. Write: 4720 Montgomery Lane, Suite 642, Bethesda, MD 20814


National Association of Geriatric Care Managers
Provides a searchable database of geriatric care managers who are committed to maximizing the independence and autonomy of elders while striving to ensure that the highest quality and most cost effective health and human services are used when and where appropriate. A comprehensive list of organizations serving the needs of elderly and their caregivers can be found via the home page by clicking on "Care Management Resources."


National Family Caregivers Association
A grass roots organization created to educate, support, empower and speak up for the common needs and concerns of all family caregivers.


Christopher & Dana Reeve Foundation
Dedicated to curing spinal cord injury by funding innovative research, and improving the quality of life for people living with paralysis through grants, information and advocacy. Visit the website for articles and resources, including conversations' with WHYY's Dr. Dan Gottlieb.


Well Spouse Foundation
An association of spousal caregivers which provides peer support groups for long term caregivers. Participants from friendships with other caregivers in similar situations. Call: 1-800-838-0879



Mesothelioma


Mesothelioma

Mesothelioma is a rare cancer that develops in the lungs. It is almost solely caused by exposure to asbestos, which was used in everything in children's toys, house-hold insulation, and naval carriers. Most mesothelioma cancer cases are terminal and occur in senior citizens, including many veterans, which will likely require long-term care. The following websites offer comprehensive information about the disease:


MesotheliomaHelp.org
An online resource for education about mesothelioma, and offers an annual scholarship essay contest where we give out $10,000 in scholarships to students in colleges and universities throughout the United States. MesotheliomaHelp.org is active online community made up of medical professionals, caregivers and survivors that share their experiences and advice with readers.


Mesothelioma Group
An online resource for education about mesothelioma.


Mesothelioma Resource Online
A site to provide answers and support for people diagnosed with mesothelioma, a rare form of cancer that is caused by exposure to asbestos, as well as for their families.


Mesothelioma Guide
Provides information on improving your prognosis and finding doctors and financial help for those diagnosed with mesothelioma, as well as survivor stories.


Pleural Mesothelioma
Pleural Mesothelioma is the most common type of mesothelioma, a rare cancer that develops in the lungs.



Art Therapy


American Dance Therapy Association
ADTA stimulates communication among dance/movement therapists and members of allied professions through publication of the ADTA Newsletter, the American Journal of Dance Therapy, monographs, bibliographies, and conference proceedings.


American Music Therapy Association
The mission of the American Music Therapy Association is to advance public awareness of the benefits of music therapy and increase access to quality music therapy services in a rapidly changing world. Music Therapy is an established healthcare profession that uses music to address physical, emotional, cognitive, and social needs of individuals of all ages. Music therapy improves the quality of life for persons who are well and meets the needs of children and adults with disabilities or illnesses.


Delaware Valley Art Therapy Association
The Delaware Valley Art Therapy Association, Inc., an affiliate chapter of The American Art Therapy Association, Inc., is a professional organization dedicated to the use of art as a healing process. Its mission is to promote the development and public awareness of the field of art therapy through the advancement of research, professional standards, education, legislation and public forums. DVATA has been serving Pennsylvania, Southern New Jersey, and Delaware since 1968.


Kardon Institute for Arts Therapy
For over 30 years, the Kardon Institute has helped individuals with special needs through comprehensive music, dance and art therapy. Older individuals may be ideal candidates for music therapy because of a long-term love of music, or when it has been determined that verbal interventions would not be as effective. Music has been known to positively change moods, affect physiological responses and help form lines of communication where none existed before.


Time Slips Project
Alzheimer's and art: A storytelling method



Regional Resources


PENNSYLVANIA

Area Agencies on Aging: County programs are designed to support the caregiver so they can continue to provide care to an older loved one in the care recipient's home.


National PACE (Programs for All-inclusive Care for the Elderly) Association
Programs for All-inclusive Care for the Elderly provide and coordinate all needed preventive, primary, acute and long term care services so that an older individuals can continue living in the community. To be eligible for PACE a person must be 55 or older, be certified by the state to need nursing home care and live in an area served by a PACE program. In Pennsylvania, this program is called LIFE (Living Independently for Elders), due to the prexisitng pharmacy benefit program administered by the state also called PACE. Further information on PACE and LIFE programs can be found at the national web site. Local sites are:

  • LIFE University of Pennsylvania School of Nursing
    4101 Woodland Avenue
    Philadelphia, PA 19104
    215-573-7200

  • LIFE Saint Agnes
    1500 S. Columbus Boulevard
    Philadelphia, PA 19147
    215-339-4447


Visiting Nurse Association of Greater Philadelphia
The Visiting Nurse Association of Greater Philadelphia is a not-for-profit provider of home health care throughout southeastern Pennsylvania. VNA services include skilled nursing, therapies, social work and home health aide care as well as home hospice care and specialty care services. VNA HouseCall, a team of visiting doctors and nurse practitioners, provides diagnostic, prescriptive and primary care medical services in patients' homes. Monroe Office Center, One Winding Drive, Philadelphia, PA 19131. Call: 215-473-0772


REGIONAL RESOURCES - DELAWARE

CARE Delaware
Assistance for caregivers includes needs assessment and care planning by experienced Delaware Division Of Services for Aging and Adults with Physical Disabilities (DSAAPD), organization of support groups and caregiver training, respite care, statewide caregiver Resource centers and community based services. Call: 1-800-223-9074; New Castle County: 302-453-3820; Kent/Sussex Counties: 302-422-1386


Contact Delaware
24-hour, 7 day/week crisis helpline for all problems, staffed by trained volunteers who provide telephone support and referrals, including bereavement support groups and grief counseling throughout the state. Call: 1-800-262-9800


REGIONAL RESOURCES - NEW JERSEY

New Jersey Area Agencies on Aging
Each of New Jersey's counties has an agency to serve as the primary entity responsible for developing comprehensive, coordinated systems of community-based services for older adults.


Caregiver NJ
A newly launched website designed for caregivers provides basic information regarding a variety of caregiving situations, resources and services available in New Jersey to assist caregivers and helps with searches for services and resources by county.


Community Choice Promoting Dignity, Independence and Choice
Community Choice is a statewide program of the New Jersey Department of Health and Senior Services created to assure that senior citizens, persons with disabilities and their families are aware of choices they have when it comes to long term care. The 'Uselful Links' section of the website contains a comprehensive list of national and state organizations, orgainzations related to specific diseases, advocacy groups, and associations for those in different cultures.


SeniorWise Care Management
SeniorWise Care Management offers professional, certified geriatric care managers to guide families and their loved ones through the maze of long-term care options and choices. SeniorWise Care Management's mission is to help older adults remain independent and safe in their own home, for as long as possible. Services include: comprehensive in-home client assessment, family/caregiver consultation and ongoing Geriatric Care Management. SeniorWise Care Management is a non-hospice program within the Samaritan Family of Services. To find out more about SeniorWise Care Management and arrange for an assessment, call 856-522-5166 or visit www.seniorwisecare.org.



Reading resources


Always On Call — By Carol Levine

And Thou Shalt Honor: The Caregiver's Companion — By Beth Witrogen McLeod

Caregiving and Loss — Edited by Kenneth J. Doka and Joyce Davidson

Caring for Aging Parents — By Linda Colvin Rhodes, EdD

Counting on Kindness — By Wendy Lustbader

Dutiful Daughters — Edited by Jean Gould

Elder Rage or Take My Father...Please — By Jacqueline Marcel

Handbook For Mortals: Guidance For People Facing Serious Illness — By Joanne Lynn, M.D. and Joan Harrold, M.D.

Love, Honor and Value: A Family Caregiver Speaks Out About the Choices and Challenges of Caregiving — By Suzanne Geffen Mintz

Respecting Your Limits When Caring For Aging Parents — By Vivian Greenberg

The 36 Hour Day: A Family Guide to Caring for Persons With Alzheimer Disease, Related Dementing Illness, and Memory Loss in Later Life — By Nancy L. Mace, Peter V. Rabins, MD