Dementia is a disease of the brain that interferes with a person’s ability to perceive and think in a normal manner. Alzheimer’s disease is the most common cause of dementia, but there is more than one kind of dementia.
Although people with dementia often exhibit behaviors that are challenging for family and professional caregivers to manage, the behaviors are caused by damage to the brain and are not intentional. Challenging behaviors can be caused by unmet needs and may be a means of communication. By carefully observing what comes directly before and after a behavior, caregivers may be able to determine the underlying need and learn how to alleviate the challenging behavior.
People with dementia need to be treated with kindness and with the knowledge that they can still enjoy life. Physical and chemical restraints should be used only as a last resort. There are many proven alternatives to physical and chemical restraints that are the mainstays of individualized care.
Activities of daily living are disrupted in those with dementia. As dementia progresses, family members and caregivers must step in to assist with personal care and household management. Caregiver training is an essential component for anyone caring for a person with dementia. Family caregivers play a critical and often-overlooked role in the care of people with dementia—especially in the early to moderate stages. Caregivers often experience stress, which can be lessened by accessing respite care and adult daycare services.
Adult daycare centers built around a philosophy of person-centered care can have a profound and positive effect on challenging behaviors associated with dementia. Providing a safe, clean, home-like environment in which clients and staff work together has been shown to improve outcomes in those with dementia.
Communication issues affect people with dementia. As the dementia progresses, it becomes more difficult for people with dementia to communicate their needs. Good verbal and nonverbal communication skills are needed for caregivers to provide a high level of care as the dementia progresses.
Caregivers—both family and professional—experience many ethical conflicts when caring for a person with dementia. Education and training in ethical decision making and conflict resolution are invaluable tools to improve the experience of those with dementia.
Working with people who have dementia can be satisfying and rewarding. It takes patience, practice, and training to learn to understand the world from that person’s point of view. People with dementia can still enjoy life. They can enjoy memories, interactions with the people around them, and activities that are matched to their preferences and abilities. Your efforts to make the person comfortable and happy can make a big difference in their final years of life.
2-1-1 Information and Referral Search
For help with food, housing, employment, healthcare, counseling, and crisis intervention, and more in many counties in Florida. www.211.org, or call 211
Provides support, education, and research throughout Florida. They have excellent educational material, a newsletter, fundraising and volunteer opportunities, and a 24/7 helpline. www.alz.org.
Alzheimer’s Disease Education and Referral (ADEAR) Center
Established by an act of Congress in 1990—part of the National Institutes of Health. Compiles, archives, and disseminates information about AD for health professionals, people with AD and their families, and the public. The website provides excellent educational material about Alzheimer’s disease, current research initiatives, support services, and much more. www.nia.nih.gov/alzheimers.
AlzOnline: Caregiver Support Online
Part of the Center for Telehealth and Healthcare Communications at the University of Florida. It provides caregiver education, information, and support for those caring for a family member or friend with Alzheimer’s disease or related dementias. alzonline.phhp.ufl.edu/
A nonprofit organization located in Tallahassee. Provides comfort, support, and assistance to persons with memory disorders and their caregivers. Serves the Big Bend community of Florida with education and training, in-home respite, support groups, counseling, referral to community resources, and recovery of wanderers through the Project Lifesaver program. Services are free of charge. www.alzheimersproject.org/ 850 386 2778
Area Agency on Aging for North Florida
Serves as the designated Aging Resource Center for the Panhandle and Big Bend areas. Consumers, families and caregivers can access the Aging Resource Center in their community by calling the Elder Helpline. www.aaanf.org/ 800 963 5337
CJE Senior Life
Provides caregivers with educational materials and resources applicable to many different caregiving situations. Addresses risk of caregiver burnout by sharing expertise in dealing with the older adult population. www.cje.net/
A public service of the Administration on Aging, U.S. Department of Health and Human Services; a nationwide service that connects older Americans and their caregivers with information on senior services. https://eldercare.acl.gov/Public/Index.aspx, or call 800 677 1116
Family Caregiver Alliance National Center on Caregiving
A community-based nonprofit organization that addresses the needs of families and friends providing longterm care for loved ones at home. Provide assistance, education, research, and advocacy. www.caregiver.org / 800 445 8106
Florida Adult Day Services Association (FADSA)
Provides leadership, education, planning, and development of adult day services across Florida. Promotes quality day services, respite programs, adult day health centers, and education, training, and advocacy within the long-term care industry. https://www.fadsafl.org/
Florida Council on Aging
A statewide association that represents aging interests through education, information-sharing, and advocacy. www.fcoa.org / 850 222 8877
Florida Department of Elder Affairs
Coordinates and develops policy for the Alzheimer’s Disease Initiative, provides services for individuals with Alzheimer’s disease, and similar memory disorders, and their families. Provides supportive services including counseling, consumable medical supplies and respite for caregiver relief; memory disorder clinics to provide diagnosis, research, treatment, and referral; model daycare programs to test new care alternatives; research database and brain bank to support research. elderaffairs.state.fl.us/index.php, or call 850 414 2000
Florida Elder Helpline: Florida Department of Elder Affairs
Provides information about elder services and activities. Information is available through the Elder Helpline Information and Assistance service within each Florida County. elderaffairs.state.fl.us/doea/elder_helpline.php, or call 800 955 8770
Florida Hospice and Palliative Care Association (FHPC)
A not-for-profit organization representing Florida’s hospice programs. Ensure excellence and access to hospice care; advocates for the needs of those in the final phases of life. floridahospices.org/ 800 282 6560
Florida Telecommunications Relay (FTRI)
A statewide nonprofit organization that administers the Specialized Telecommunications Equipment Distribution Program for citizens of Florida who are deaf, hard of hearing, deaf/blind, and speech impaired. FTRI is also responsible for the education and promotion of the Florida Relay Service. ftri.org
Positive Approach to Care
Positive Approach® enhances life and relationships of those living with brain change by fostering an inclusive global community. Until There's A Cure, There's Care. https://teepasnow.com/
Share the Caregiving
Dedicated to educating the caregiving communities about the effectiveness of the Share the Care model. Share the Care encourages ordinary people to pool their efforts to help ease the burden on family caregivers and help those without family nearby. www.sharethecare.org/
Caregiver Media Group provides information, support, and guidance for family and professional caregivers. It publishes Today’s Caregiver magazine, the first national magazine dedicated to caregivers, presents Fearless Caregiver conferences, and offers a website that includes newsletters, online discussion lists, articles from Today’s Caregiver, chat rooms, and an online store. www.Caregiver.com