By Cherry, Debra; Feingold, Nicole
Aging Today , Vol. 30, No. 2
Decades ago, people diagnosed with middle- or late-stage dementia often would be placed in nursing homes, one of the few available care options. Mostly these "patients" were elderly and had been cared for at home. Not until the dementia advanced did families seek outside services. Recently, though, heightened public awareness about Alzheimer's disease has grown. Significant progress is being made in diagnosis and treatment techniques resulting in larger numbers of people seeking medical attention and receiving accurate diagnoses at earlier stages of illness.
Today, people living with early stage impairment may have great insight into their condition. They can be articulate and engaged in the community. They do not fit into existing service paradigms of caregiver support groups or Alzheimer'sfocused adult daycare centers. These individuals often are still mentally intact but struggle with common daily activities.
After people are diagnosed with early stage dementia, they must face the devastation of gradually losing their mental faculties, memories and personalities and of being a burden to their loved ones. They need support services that match their levels of capacity, not services that explicitly highlight their future of incapacity. The Alzheimer's Association and a host of community agencies now have forged partnerships to offer diverse services to persons with middle to late-stage dementia disease.
COPING WITH CHALLENGES
An early onset diagnosis, whether of Alzheimer's disease or vascular dementia, usually causes dramatic disruption in families. The Alzheimer's Association's report, 2009 Alzheimer's Disease Facts and Figures, estimates that of the 5.3 million people who are currently living with Alzheimer's disease, as many as 200,000 are under age 65. These younger onset individuals in the early stages of the disease face loss of income and insurance, and reduction or loss of retirement benefits at the height of their life responsibilities. They can expect increased expenses for their treatment and care, with insurance and other benefits being difficult to obtain and more expensive for tiiose diagnosed with dementia.
Regardless of age, the emotional toll of a dementia diagnosis can be overwhelming. In addition to the frustrations individuals experience when others cannot understand their situation, there is often a sense of dread and uncertainty about what the future holds. People living wim early stage Alzheimer's, or a related disorder, feel guilt about turning loved ones into caregivers and the impacts may be especially profound for spouses.
Most people with early diagnoses continue living at home even as the disease progresses over an extended period of time. …