Alzheimer's Disease is a chronic neurodegenerative (the umbrella term for the progressive loss of structure or function of neurons, including death of neurons.) disease that usually starts slowly and gets worse over time.
AD is usually diagnosed based on the person's medical history, history from relatives and behavioral observations. Information from medical imaging and computer technology is also studied. The diagnosis can be confirmed with very high accuracy post-mortem (autopsy) when brain material is available and can be examined.
There are four stages of AD: Pre-dementia, Early, Moderate and Advanced. For caregivers, each stage requires different levels of care and responsibility.
Family Caregiver Alliance
"Alzheimer's disease is called a family disease, because the chronic stress of watching a loved one slowly decline affects everyone. An effective treatment will address the needs of the entire family. Caregivers must focus on their own needs, take time for their own health and get support and respite from caregiving regularly to be able to sustain their well-being during this caregiving journey. Emotional and practical support, counseling, resource information and educational programs about Alzheimer's disease all help a caregiver provide the best possible care for a loved one."
Wikipedia:
"The role of family caregivers has also become more prominent, as care in the familiar surroundings of home may delay onset of some symptoms and postpone or eliminate the need for more professional and costly levels of care. Home-based care may entail tremendous economic, emotional costs as well. Family caregivers often give up time from work and forego pay in order to spend an average of 47 hours per week with an affected loved one, who frequently cannot be left alone. In a survey of patients with long term care insurance, the direct and indirect costs of caring for an Alzheimer's disease patient averaged $77,500 per year in the United States.[1] Caregivers are themselves subject to increased incidence of depression, anxiety, and, in some cases, physical health issues."
As the disease progresses, caregivers tend to suffer from anticipatory grief, which is the anticipation of their death.
"The Invisible Victims of Alzheimer's Disease: Family Caregivers" by MaryAnne Sterling
-Many sacrifices: Earnings potential, Financial Burden, Health Challenges
-Psychological Trama, Post Tramatic Stress Disorder
Roles taken on: care coordinators, medical record keepers, medical decision makers, insurance navigators, medication administrators
http://www.huffingtonpost.com/marie-marley/5-things-alzheimers-caregivers-shouldnt-do_b_2988424.html
A good information source for family caregivers:
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