Every journey begins with the first step. Do you need help finding a support group, getting supplies for your loved one, taking a break from care giving?
Today, topics for this discussion and answering questions about Alzheimer’s disease and caring for persons with Alzheimer’s and related disorders and questions will be answered by our guests: Anne Wolf, assistant deputy director of Aging Services Lt. Governor’s Office on Aging, and Sam Wiley, vice president of programs Alzheimer’s Association South Carolina Chapter.
Wolf will begin the interview to answer this question:
How widespread is Alzheimer’s disease?
“The latest figures show one in eight people age 65 and older has Alzheimer’s disease. Nearly half of people age 85 and older have Alzheimer’s disease. In South Carolina it is estimated that in 2010, 80,000 people were living with Alzheimer’s disease. That is an increase of 19 percent compared with the estimate in 2000. But this is only half of the picture. We have an estimated 770,000 South Carolinians serving as family caregivers at any given time; of these more than 283,000 are caregivers for a person with Alzheimer’s disease or a related disorder.”
What are we doing to help our caregivers?
“Unpaid family caregivers provide 80 percent of long-term care for people with special needs, including those with Alzheimer’s disease. Studies have shown that family caregivers suffer a chronic condition at more than twice the rate as non-caregivers. Family caregivers who provide more than 36 hours of care weekly are more likely than non-caregivers to experience symptoms of depression or anxiety. Many caregivers are balancing a full-time job with their care giving. Therefore many caregivers would benefit from respite.”
What is respite?
“Respite is regular, temporary breaks from care giving. It is the number one need identified by family caregivers; it is an essential service that keeps families together by protecting physical and mental health of the caregiver and providing relief from the ongoing responsibilities of care giving. Respite offers a much needed break and some “me time” for a caregiver. Breaks can be provided for as little time as an hour or two or as long as a couple weeks. It can be provided in-home or in the community, by paid providers, volunteers, family members or friends, all of whom should have appropriate training and supervision. By improving family relationships and stability, respite also helps families to delay and in many cases avoid costly hospitalization, residential or nursing facility care.
It there assistance available to help those needing respite?
“There are two main programs to assist family caregivers in need of respite. The first is the Family Caregiver Support Program. Advocates are located in your local Area Agency on Aging. They can assist with help locating community resources, support groups to connect with other caregivers and share ideas, training in stress management, financial planning and nutrition, and a mini-grant to find a short break from care giving. The second resource for caregivers is through the Alzheimer’s Association’s respite voucher program.”
We can now refer to Wiley who represents the Alzheimer’s Association for further information to explain their respite voucher program.
“Experiences caregivers have using respite. It has been documented that respite care is beneficial for the caregiver. It also has been well documented that the lack of respite care can be detrimental not only for the caregiver but to the care receiver as well. The 2012 Alzheimer’s Disease Facts and Figures report that 60 percent of Alzheimer’s and dementia caregivers rate the emotional stress of care giving as high or very high; one-third report symptoms of depression. The report also states that due to caregivers’ emotional toll of care giving on their own health, Alzheimer’s and dementia caregivers had $8.7 billion in additional health cost in 2011. There have been many times that a healthy caregiver will develop their own serious health problems due to care giving and in some cases the caregiver has passed away long before the individual needing care. By caregivers receiving respite care they are able to receive a much needed break from the daily physical and emotional stress. By receiving respite care it allows caregivers to remain healthier in order for them to continue to go forward with providing care for their loved one.
Tips on choosing a respite care provider. Before hiring a respite worker caregivers should sit down and make a list of questions they want to ask in order for them to make the best decision on choosing a respite provider. One of the main tips to keep in mind when choosing a respite worker, especially when caring for someone with dementia, is to ask the respite provider if they have experience working with individuals with dementia. It is always important to keep in mind the person that is receiving care’s likes and dislikes. Incorporate some of this information into your questions. If the care receiver is an “outdoor person” then seeking a person who may have interest in outdoors might be something to note. The idea is for the care receiver and respite worker to be able to establish a relationship. When the care receiver feels comfortable with the respite worker, it may also allow the caregiver to feel comfortable about leaving their love one.
Deciding between in-home or in a facility. When deciding between receiving care in the home versus care in a facility, a caregiver must first assess realistically at their current situation and thinking about going forward. Can the caregiver continue to provide care in the home as the patient continues to progress? Is the health becoming worse? Is there family support? What resources are available to help at home? Are their resources available to assist with placement in a facility? What is the financial status? What are the goals of the caregiver and what are the goals of the care receiver? What realistic goals from there can be obtained?”
For further assistance and information, the Alzheimer’s Association (S.C. Chapter) is available to talk to any and all individuals affected by Alzheimer’s disease as well as other dementia. The Alzheimer’s Association can be reached by 1-800-272-3900 or visit us on the web at www.alz.org/sc.