The Alzheimer’s Association is the world’s leading voluntary health organization in Alzheimer’s care, support, and research. The Alzheimer’s Association was founded in 1980 by a group of family caregivers and individuals interested in Alzheimer’s. Since its founding, the Association has grown to include eleven offices across two states. Fresno is fortunate to have a local office, which opened its doors to the community in the summer of 2015. The office provides local services, education, and support for family who have a loved one with memory loss.
I sat down with Stella De La Pena, Regional Director, and Victoria Reinhold, Family Care Associate, to discuss the needs of families in the Central Valley and how the Alzheimer’s Association is helping them. According to De La Pena, Alzheimer’s is touching a significant amount of people in the Valley. The Alzheimer’s Association projects a 78% increase of persons with Alzheimer’s by the year 2030 in Fresno. It is estimated 24,000 people in Fresno will be suffering from memory loss. This is due to people living longer, and the aging of the Baby Boomers.
De La Pena emphasized that families are not really prepared to deal with the cost of caring for a loved one with memory loss. In Fresno the cost of caring for someone with Alzheimer’s depends on many factors. Some of the factors include the stage of Alzheimer’s, if they have additional chronic health conditions, and how many family members are available to help. In the earlier stages of Alzheimer’s the costs are more manageable, especially if family does the caregiving. However, there is significant cost to family caregivers; in addition to the physical demands of caregiving, family members often decrease the number of hours they are working, or stop working all together. This could be an additional loss of income of $5,000 a year. For some families, depending on their financial situation they could give up a vacation or not be able to purchase food for their home.
Complete memory care, depending on the needs, and depending on where the care is provided, can run anywhere from $4,000 to $7,000 or higher a month. Paying for long-term care can only last so long. Alzheimer’s is a disease that can last from 2 to 20 years; it can end up bankrupting people. Families can lose their homes, their savings, their retirement. De La Pena says, “As a community we are not prepared financially.”
Both De La Pena and Reinhold want families to know that if their loved one has memory loss the Alzheimer’s Association is there to support them. De La Pena explained, “Many caregivers are overwhelmed and do not have information about the disease. There is still a lot of misconception about Alzheimer’s. There also has to be willingness to understand and learn skill sets that can improve the quality of life for the person with the disease and the caregiver, so that life can become manageable. It is possible for Alzheimer’s to be manageable, and people don’t know that with additional education and skill sets Alzheimer’s can be manageable. With support family members can be informed enough that when it becomes no longer manageable they can make a choice. They will be informed about other options to get support for their loved one and themselves. Some family members feel incredible responsibility but need information to be a more effective caregiver.”
“There are so many families suffering in silence because people don’t talk about the disease and they don’t reach out for help.”
Ways the Alzheimer’s Association Helps Families
For help call 1 -800-272-3900. The helpline is answered 24/7 and is available in multiple languages. The call is then redirected to the Fresno office.
Victoria (Vicky) Reinhold often does the initial Care Consultation with families, either in person or by phone. There is no charge for Care Consultations, even for ongoing support. Family members often do not know where to start, so she typically provides basic information, and then focuses on the unique needs of the caregiver and the loved one. If there is no formal diagnosis of memory loss she offers assistance with finding a doctor and questions to ask during the doctor’s visit, and has a guide to organize medications. She provides helpful communication tips on how to talk to a loved one with Alzheimer’s. She always looks for unmet needs, and has a wide variety of referral sources to help solve caregiving needs. These can include activity and socialization, in home care, adult day care, other interventions, and help with planning for future changes and long-term planning. She conducts follow-up assessments to determine if the referrals worked out and to see if there are other concerns which need to be addressed. She also focuses on the caregiver; making sure the caregiver is supported.
According to Reinhold, many family members tell her, “I wish I had known about you earlier.” There are so many decisions to be made, and the Alzheimer’s Association can help with all of them. The Association is here for the long term. We make suggestions, and try different things if something doesn’t work. She wants her family members to have better days. She recalls one caregiver who told her, “Before I didn’t have any hope, every day was bad. I am having more good days and the person I am caring for is having better days.”
Help for Wandering
The Alzheimer’s Association provides a safety service, Medi-Alert + Alzheimer’s Safe Return program. This is a 24-hour nation-wide emergency response service for individuals with Alzheimer’s who wander or have a medical emergency. This is a universally recognized integrated system for first responders. There is a medic alert like bracelet (or necklace) and an option to link to a caregiver bracelet. The medic alert system is linked to the family, law enforcement, the Alzheimer’s Association and medical first responders. There is a set-up fee ($55) for the bracelet and a monthly monitoring fee. However, the Alzheimer’s Association offers a scholarship to help defray the cost.
Help Developing Caregiving Skills
Skill sets constantly need to change, as circumstances, behaviors, and challenges change. Family members are often not prepared for this exhausting type of care. Often the caregivers’ health becomes compromised because they are not caring for themselves. Many caregivers want to keep their loved ones at home, and the Alzheimer’s Association can help them consider their options, while also supporting the caregivers.
The more knowledge a family has, the better their ability to understand available resources and make the decision that best works for their family. Referrals exist for many different services including how to find long-term care housing. Victoria Reinhold can discuss the options of assisted living, skilled nursing, and other residential group living options.
There are many support groups in the Central Valley. The list can be accessed here. There are google hangouts for caregivers 40 and under, and telephone support groups for adult child caregivers (see page 4 of the list).
This past year they offered 45 educational programs to educate the community about Alzheimer’s disease, and provide helpful information for caregivers. The Fresno office partners with UCSF, Fresno and the Valley Caregiver Resource Center to offer three Caregiver Conferences each year: The Annual Central Valley Alzheimer’s Caregiver and Wellness Conference and two conferences designed to support the needs of caregivers. They also host a Spanish Caregiver Conference and an African American Forum.
Respite Care (For a break)
The Alzheimer’s Association offers a respite grant to families caring for a loved one with Alzheimer’s disease or a related disorder. It helps pay for in-home care, adult daycare or overnight care in a facility only and the Association pays the provider of the respite directly. They do not pay family members to care for their loved one. This is a one-time only grant typically in the amount of $1,000 to provide a temporary break for the primary caregiver. The local Fresno office can assist with filling out the application for this grant.
The Alzheimer’s Association connects and supports people across the globe through their online community.
Comprehensive online resources and information through our Alzheimer’s and Dementia Caregiver Center is available for families during the early, middle and late stages of care giving.
The Alzheimer’s Navigator helps families facing the disease determine their needs and develop an action plan for their care.
The online Community Resource Finder is a comprehensive database of programs and services, housing and care services, and legal experts. Many of these resources are local.
The Alzheimer’s Green- Field Library, is the nation’s largest library and resource center devoted to increasing knowledge about Alzheimer’s disease. Most resources are online. Materials can be requested through the Fresno local office. The Fresno office also has a small lending library.
The Alzheimer’s Association Needs Your Help
As a volunteer driven organization, volunteers are the backbone of the Alzheimer’s Association. With their dedication and support, we move closer to a world without Alzheimer’s disease every day. The Association has many ways individuals can get involved. Volunteers can make a difference by: coordinating an event, serving on a committee, supporting the Alzheimer’s Association signature fundraising events such as the Walk to End Alzheimer’s or The Longest Day, providing support in the Fresno office, joining the Public Policy Committee and advocating for Alzheimer’s disease, helping families on the Helpline, photographing an event, and supporting community outreach and educational events.
To learn more about Alzheimer’s, visit the Association Website, call the helpline at 800.272.3900 24/7, or stop by the Fresno office at 550 W. Alluvial Avenue, Suite 106, Fresno, CA 93711.