The Association for Frontotemporal Degeneration

(1)What are the historical context and current purpose of The Association for Frontotemporal Degeneration (AFTD)?

AFTD was founded in 2002 by former caregiver Helen-Ann Comstock. She recognized a need for an organization that specifically spoke to the needs of people affected by frontotemporal degeneration (FTD). The organization seeks to promote and fund research; provide information, education and support to patients and families; educate those in the medical field about FTD; bring about a greater public awareness of FTD; advocate for quality care and services; and facilitate the international exchange of ideas regarding FTD. The organization serves the United States and Canada from one office outside Philadelphia, PA. We envision a world where frontotemporal degeneration is understood, effectively diagnosed, treated, cured and ultimately prevented.

(2) What are the key issues that it is addressing now?

AFTD has recently launched an education program for staff of long-term care facilities. It is designed to educate these professionals on how to better care for FTD patients, as their behaviors and needs are different from patients with other forms of dementia. AFTD also leadsthe FTD Treatment Study Group (FTSG), a joint effort on the part of the pharmaceutical industry, biotechs, clinicians and nonprofits to stimulate transfer of scientific advances into clinical trials and development of the first therapeutics for FTD.

(3)What might be a typical caregiver's situation and how would her or his specific needs be addressed? How can the organization help family caregivers or helping professionals advocate for themselves, their loved ones and their clients?

FTD is variable in the specific symptoms and rate of progression experienced by any one person. What unites families is the isolation and frustration caregivers experience as they manage a rare and poorly understood disease. Typically, people receive several misdiagnoses and off-target treatments before being diagnosed with FTD. A correct diagnosis provides momentary relief for many, but that evaporates in their need for support and services. Many doctors tell families that there is no treatment, no cure and nothing they can do.

AFTD is the antidote to that. We exist to advocate for and with families affected by FTD so they do not have to do it alone. AFTD provides materials and tools for caregivers to learn to manage care and to advocate for needed services. We connect caregivers with other FTD caregivers for support because they are the only ones who truly understand the impact of this disease. AFTD's website and HelpLine provide the gateway to what we offer and each inquiry receives an individual response.

(4) Are there any future plans for the organization?

The organization has a very clear vision for its future: AFTD plans to continue to its work towards getting effective diagnoses, treatments and a cure for FTD. Education and funding research are the keys to achieving these goals. In recent years, the organization has expanded dramatically and with the support of families, professionals and volunteers, we hope to continue to grow and meet the critical needs of our community in both "care and the cure."

(5) Is there anything else you would like people to know?

AFTD has funded over $1 million in FTD research since its inception 10 years ago. Several major discoveries on the genetics and pathology of FTD have been made during that time. There are currently more than 60 support groups for FTD caregivers across the country and in Canada. AFTD has a strong, committed Board of Directors, most of whom have been or are FTD caregivers. A prestigious Medical Advisory Council, comprised of the top minds in FTD research and clinical care, serves as a phenomenal resource for the organization. The FTD community knows that AFTD is the resource for information on and support for this disease.

(6) If readers have other questions, how can they obtain more information?

Caregivers of people with FTD are welcome to email us at [email protected]. They can also register with us on our website at www.theaftd.org to receive our newsletters and stay on top of the latest news and research in the field. AFTD also offers a toll-free HelpLine at 866-507-7222 for anyone with questions about FTD.

March 1

Behavioral Activation: An Effective Intervention for Late Life Depression; and Fall Risk and Prevention in Older Adults. This series features issues in clinical ethnogeriatrics and is for nurses, social workers, marriage and family therapists, physicians, psychologist and other health and social service providers who work with elders and their families from diverse cultural backgrounds. For more details and to register, go to: http://sgec.stanford.edu/events.html

March 28-April 1

Aging in America, the 2012 Annual Conference of the American Society on Aging, will take place in Washington, DC. Family Caregiver Alliance will host several sessions, including "Family Caregivers: Policy Perspectives and Media Musings," in addition to a reception to honor the recipients of the 2011 Rosalinde Gilbert Innovations in Alzheimer's Disease Caregiving Legacy Awards. . . .

The reception will be held at the Marriott Wardham Park Hotel on March 30th at 6:30 p.m. and will include presentations about the awarded program or project in three categories: Creative Expression, Policy and Advocacy, and Diverse/Multicultural Communities. The ASA Conference is the largest gathering of a diverse, multidisciplinary community of professionals from the fields of aging, healthcare and education, along with business leaders from across the United States. View details here.

April 23-25

The 2012 Alzheimer's Association Advocacy Forum will be held April 23-25 in Washington, DC. U.S. Health and Human Services Secretary Kathleen Sebelius , the featured luncheon speaker, will discuss the progress of the National Alzheimer's Plan. Leading political commentator and pollster, Frank Luntz, will be the keynote speaker. . . .

Dr. Luntz , who has been an Alzheimer's advocate for several years, will provide insights to persuasively making a case for action on Capitol Hill. Attend the Forum to learn more about Alzheimer's-related legislative issues and network with fellow advocates from across the nation. For more details and to register, visit: http://www.alz.org/forum/overview.asp.

President to Seek Additional Funds for Alzheimer's Disease Research

More than 5 million people already have Alzheimer's disease or related dementias, a number that is expected to more than double by 2050 because of the aging population. As a result, related medical and nursing home bills will increase significantly.

The President's move is part of the Administration's development of the first National Alzheimer's Plan, to combine research toward better treatments along with steps to help overwhelmed families better cope today. "Reducing the burden of Alzheimer's disease on patients and their families is an urgent national priority," Health and Human Services Secretary Kathleen Sebelius said. For more information, go to: http://www.hhs.gov/news/press/2012pres/02/20120207a.html

New Studies Shed Light on the Spread of Alzheimer's Disease

. . . it may be possible to bring Alzheimer's disease to a halt early on by preventing cell-to-cell transmission, perhaps with an antibody that blocks tau. Although the studies were conducted with mice, researchers say they expect that the same phenomenon occurs in humans because the mice had a human tau gene and the progressive wave of cell death matched what they see in people with Alzheimer's disease.

One study, by Karen Duff, Dr. Scott A. Small and their colleagues at the Taub Institute for Research on Alzheimer's Disease and the Aging Brain in New York, was published in the journal, PLoS One. The other, by Dr. Bradley T. Hyman, director of the Alzheimer's Disease Research Center in Massachusetts, and his colleagues, will be published in the journal, Neuron. For more information about the studies, visit the New York Times website.

More Assistance for Family Caregivers

The service plans are Web Advisor, Phone Advisor, In-Home Advisor and Service Finder-based on the understanding that families facing a caregiving situation often want options when it comes to meeting their caregiving needs.

AARP members and the general public, as registered visitors, can search their national database of over 90,000 providers to find local caregiving providers, rate caregiving providers, access supporting information to help guide them in their decision making, and sign up for an e-newsletter. For more information, go to: Genworth.com/caregiving and www.AARPhealthcare.com.

Also, visit http://www.helpstartshere.org/seniors-aging/caregiving on the National Association of Social Workers' website for information about caregivng trends, options, tip sheets, resources and caregivers' stories.

Apps and Journals Can Help Manage Caregivers and Care Recipients' Health Records

The Minerva Health Manager can be used to keep track of all health-related appointments while also storing information related to immunizations, medications and health records. Minerva is accessible from a computer, iPad, iPhone, Android or through a portable flash drive. MyMedical, a smartphone application, allows you to input health care information, including doctor's visits, health records or when prescriptions need to be renewed. It is available for iPhone, iPad, iPod Touch and Macs. Mayo Clinic Health Manager Software, by Microsoft Health Vault, keeps a family's health records and appointments in one secure place. This software provides interactive tools to help evaluate your family's health and can send e-mail reminders for upcoming appointments. The Personal Health Journal will help you to record what happened at during the last checkup, keep a list of medicines on hand and help keep immunization schedules straight, if you prefer putting information on paper. For the full article, visit: www.poughkeepsiejournal.com

NCOA and n4a Encourage Seniors to Check on Benefits

An analysis of the findings from a random sampling of 1,100 older adults or caregivers who had used NCOA's Benefits Check Up website since 2010 revealed that more than 70 percent were eligible for at least one benefit they were not receiving.

The Council and the Association will distribute booklets to be distributed through local agencies on aging (AAAs) and place notices on their and other organizations' websites. The slogan makes the point that older people have been contributors and, in some cases, these are programs people have invested in throughout their working lives. Both tailor their responses to an individual's geographic location, income, veteran status and other such factors. The campaign directs older adults and their caregivers to: The Eldercare Locator at 800-677-1116 or online at www.eldercare.gov; and the National Council on Aging's www.benefitscheckup.org.

Getting to Know the Lifespan Respite Grantees and Stakeholders

Main Activities: The Nevada Lifespan Respite Care Program has been working on developing respite standards and policy, including expanded definitions around respite, respite care, respite programs, and care. They have been making connections with new respite programs and services and have worked to improve the ADRC website, with online resources and a specialized I&R search for respite. A ten-question Caregiver Assessment has also been prepared for universal use by respite programs, the ADRC and Nevada 2-1-1 to assist in making targeted referrals and for use as an online caregiver risk assessment. The tool will be used as part of the Respite Expansion Grant activities to test its viability and value to Nevada.

On the ADRC information portal, a "Respite Care Search Assistant," is being created to match caregivers with respite resources via a few caregiver questions and zip codes from the ADRC database. The portal will also collect caregiver stories to encourage family caregivers to use respite, and to overcome their resistance to respite.

In September 2011, Nevada was awarded a Respite Expansion Grant from AoA in order to provide some direct services. (see related story State Lifespan Respite Programs Use Enhancement Grants to Deliver Services in this issue). They are implementing a voucher program that is directed primarily at under-served populations state-wide including: caregivers of individuals between 18-64 years old, those in rural communities and Hispanic families. Data collection is focused on family caregivers rather than on care recipients, to better know their needs and the barriers to respite. Additionally, Nevada is hosting a Lifespan Respite Summit in June 2012 in order to strengthen their statewide network and plan additional ways to promote and implement their state Lifespan Respite plan.

State Respite Coalition Role

The Nevada Lifespan Respite Care Coalition serves as a key partner for the Lifespan Respite Grants and is responsible for maintaining and expanding the statewide respite network. The coalition collects and analyzes data on caregivers' needs, and engages in awareness and legislative advocacy activities. The coalition is an incorporated non-profit which is led by a board of directors with membership from state agencies, nonprofits, service providers, and professional and family caregivers interested in respite issues. Membership is open to all who are interested.

State Aging and Disabilities Resource Center (ADRC) Role

The ADRC is responsible for creating and maintaining web-based resources for the Lifespan Respite Grants. ADRC sites also have a role in identification of caregivers and referral to respite resources. The ADRC will survey caregivers to help improve referral to respite services and report on the overall success of the Nevada Lifespan Respite Care Program.

Key Contacts:

Vicki Puccinelli
Nevada Aging and Disability Services Division
3416 Goni Road, Bldg. D, #132
Carson City, NV 89706
775-687-0561 voice
[email protected]

Cheryl Dinnell
Lifespan Respite Program Coordinator
890 Mill Street, Ste. 102
Reno, NV 89502
775-337-2571
775-315-1103 mobile
[email protected]

State Lifespan Respite Programs Use Enhancement Grants to Deliver Services

• Nevada's Lifespan Respite Balancing Initiative establishes a respite voucher program that is directed primarily at under-served populations state-wide (see related story Getting to Know the Lifespan Respite Grantees and Stakeholders in this issue). This program provides a reimbursement voucher award for up to a maximum of $600/year to pay for respite services for one primary caregiver per family. High priority will be given to rural caregivers, Hispanic families, and adult care recipients between ages 18-64. The second level of priority will be given to "compound caregivers" who are also caring for minors and/or more than one care recipient with special needs, caregivers living in the same residence as care recipients, and care recipients with functional limitations that prevent them from being left alone for any period of time. Vouchers can be used to pay for respite services, a friend, neighbor, or relative who will provide care in the care recipient's home but does not live there themselves, or an independent caregiver/respite provider selected by the family.
• In North Carolina, the goal of their one-year expansion project is to fill identified gaps and address unmet respite needs of family caregivers across the lifespan. The objectives are to: 1) provide respite to identified caregiver audiences; 2) enhance effective use of respite services; and 3) further sustain the state's "Just One More" initiative to bring new or enhanced respite services to each of NC's 100 counties. Public agencies and non-profit organizations that have a history of successfully delivering respite services are eligible to apply for mini grants in two areas: direct respite service funding for new recipients across the lifespan; and 2) "Just One More" funding to enhance and/or expand respite in underserved counties. The direct service funding will be targeted to those with incomes slightly above NC's Medicaid threshold who do not qualify for other publicly-funded resources; caregivers whose family member requiring care is between the ages of 18 and 59; caregivers of individuals with a traumatic brain injury or sudden disabling condition; caregivers whose family member is on a waiting list for CAP services; and, caregivers who live in counties with few or no respite providers.
• South Carolina will also target underserved populations for receipt of respite services. The Lt. Governor's Office on Aging is the grant recipient, but project management has been delegated to the SC Respite Coalition. The focus is on family caregivers caring for adults between 18 and 60 years old who are not receiving respite now. The SC Respite Coalition will work with SC Autism Society, local faith communities, and the SC Adult Day Services Association and Adult Day Service providers across the state to serve families. In collaboration with Community Long Term Care, one of the state's Medicaid waiver programs, the SC Respite Coalition will offer respite to some of the family caregivers whose loved ones are on the waiting list (over 3,000 people statewide.) The SC Autism Society will subcontract to provide special respite events for waiting list families of SC Department of Disabilities and Special Needs. This grant also will enable the Respite Coalition to develop the infrastructure for a respite voucher program. Additionally, 10 mini-grants of about $500 will be awarded to faith communities on the verge of starting a respite ministry.

For more information on these and other states which received FY 11 expansion grants, email either Jill Kagen, or Greg Link at AoA.

ARCH and NH Lifespan Respite Project Presents at Association of Maternal and Child Health Programs National Meeting

In New Hampshire, the state's Title V Children with Special Health Care Needs (CSHCN) Program in the Division of Community Care Services under Bureau of Developmental Services successfully stepped forward to assume the leadership role for their state Lifespan Respite grant. CSHCN programs have years of experience in family support and are logical homes for respite service delivery. In an attempt to educate other state CSHCN programs about Lifespan Respite and to encourage them to consider applying for the upcoming Lifespan Respite program announcement from the U.S. Administration on Aging, expected in March 2012, Jill Kagan from ARCH and Sharon Kaiser, the Lifespan Respite Project Coordinator with the New Hampshire CHSCN program presented at the annual meeting of the Association of Maternal and Child Health Programs in February. New Hampshire has partnered successfully with their aging and disability counterparts in the state to develop training modules for populations with Severe Emotional Disturbance (SED) and Traumatic Brain Injuries (TBI); develop a marketing campaign to recruit and train providers; and design and implement a coordinated registry providing access to fully trained respite care providers. For more information on how and why the NH CSHCN program decided to apply for a Lifespan Respite grant, please contact Sharon Kaiser at [email protected] or for more information about how a state agency can apply for the Lifespan contact ARCH.

New Report from the Institute of Medicine Cites Benefits of Respite

Also, the book recommends increasing support for implementation research on how to disseminate effective long term lifestyle interventions in community-based settings that improve living well with chronic disease. Citing important research evidence about the benefits of respite in the chapter on Community-based Interventions, the report concludes: "As the evidence shows, although respite services provide proven benefits, most caregivers feel that what's out there is not enough (Paraponaris et al., 2011; Stirling et al., 2010). In addition, because a majority of those among lower socioeconomic status often experience difficulties in gaining access to these kinds of services and because informal care consumes almost two thirds of all care in a year, more services should be offered (Paraponaris et al., 2011)." To download the report and retrieve the citations, visit the IOM website.

Report Citation: IOM (Institute of Medicine). 2012. Living well with chronic illness: A call for public health action. Washington, DC: The National Academies Press.