Dementia is a degenerative disease that eventually affects a person’s ability to live independently. There are many types of dementia, although Alzheimer’s disease is the most common type. Delirium and depression can be confused with dementia and a thorough evaluation should rule out other causes of cognitive loss prior to making a diagnosis 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 are often a means of communication. By carefully observing what occurs before and after a behavior, a caregiver should be able to identify the underlying need and determine how to address 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 and for the shortest possible time. There are many proven alternatives to physical and chemical restraints that are the mainstays of individualized care.
Activities of daily living are disrupted in people with dementia. As the dementia progresses, caregivers must step in and assist with personal care and household management. They must also design individual and group activities that provide a sense of accomplishment and well-being.
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 loved ones with dementia—especially in the early-to-moderate stages. Caregivers often experience stress, which does not abate simply by placing their family member in a care facility. In a facility, professional caregivers must be trained to view the person with dementia in the context of a family.
Facilities 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 residents and staff work together has been shown to improve outcomes in those with dementia.
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.
The Alzheimer’s Project, located in Tallahassee provides comfort, support, and assistance to persons with memory disorders and their caregivers. It serves the Big Bend community of Florida through 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
Florida Adult Day Services Association (FADSA)
Provides leadership, education, planning, and development of adult day services across Florida. FADSA promotes quality day services, respite programs, adult day health centers, and education, training, and advocacy within the long-term care industry. www.fadsa.net/
Florida Council on Aging
Serves Florida’s aging interests through education, information-sharing, and advocacy. Founded in 1955, it is Florida’s only statewide association representing virtually all aging interests and disciplines. www.fcoa.org/850 222 8877
Florida Department of Elder Affairs (FDEA)
A comprehensive listing of Alzheimer’s and dementia care resources throughout Florida including memory disorder clinics, model daycare, the Alzheimer’s Rural Care Healthline, Respite Services for Caregiver Relief, and links to Alzheimer’s disease information. elderaffairs.state.fl.us/english/alz.php/ 850 4142000
Florida Hospice and Palliative Care Association (FHPC)
FHPC is a not-for-profit organization representing Florida’s hospice programs. Its mission is to ensure access to hospice care, and it advocates for the needs of those in the final phases of life. www.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. Responsible for the education and promotion of the Florida Relay Service. www.fccdhh.org/services/assistive-technology/florida-telecommunications-relay-inc.html
Memory Disorder Clinic at the Tallahassee Memorial Neuroscience Center
A team of memory disorder specialists who provide a comprehensive diagnostic evaluation for persons concerned about memory problems. www.tmh.org/memory 850 431 5001
AlzOnline: Caregiver Support Online
Part of the Center for Telehealth and Healthcare Communications at the University of Florida. 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/
CJE Senior Life
Provides caregivers with educational materials and resources for many different caregiving situations. Addresses the risk of caregiver burnout by sharing expertise in dealing with the older adult population. www.cje.net/
Family Caregiver Alliance (FCA)
Provides information, education, services, research, and advocacy for families caring for loved ones with chronic, disabling health conditions. In person and online resources listed by state. www.caregiver.org
Florida Elder Helpline
Provides information about elder services and activities, which is available through the Elder Helpline Information and Assistance service within each Florida County. http://elderaffairs.state.fl.us/doea/elder_helpline.php 850 414 2000
Florida Respite Coalition
Supports caregivers and promotes quality respite care to individuals with special care needs throughout the state. www.floridarespite.org
National Council of Certified Dementia Trainers
Promotes standards of excellence in dementia education for professionals and other caregivers who provide services to dementia clients. www.nccdp.org
Share the Caregiving
Dedicated to educating the caregiving communities about the effectiveness of the Share the Care model. Encourages ordinary people to pool their efforts to help ease the burden on family caregivers and help those without family nearby. sharethecare.org/
Strength for Caring (SFC)
Provide family caregivers with a broad range of expert content and information, an emerging online community, daily inspiration, and much needed support. strengthforcaring.com/
Information, support, and guidance for family and professional caregivers. 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. Caregiver.com