Be An Alzheimer's Advocate
When we think of caring for an individual with Alzheimer's disease, we tend to think in terms of the disease's impact on our loved one, keeping the person active, obtaining the right medication, providing help with eating and dressing, doing the right thing, etc.
It seems cold to think of the disease in terms of how much it costs. But when it comes to a chronic disease, cost is a harsh reality that can't help but be interwoven with our major focus on providing the best in care.
The cost of care adds up in the blink of an eye: doctors' visits, medications, home care, adult day programs, special equipment to aid with activities of daily living, safe-proofing one's home - the list goes on and on. Add to this, as you may know first-hand, the cost of a family caregiver's lost wages due to absenteeism or having to quit one's job entirely to stay home with a loved one.
Worse, the financial burden comes on top of enormous physical and emotional stresses. Nearly 60 percent of individuals with Alzheimer's disease live at home under the care of family members. Studies show that caregivers of individuals with dementia spend significantly more time on caregiving tasks than do people nursing those with other diseases - an average of 85 hours per week - and they suffer more physical and mental health problems, including sleep disturbance, social isolation and depression.
What's a caregiver to do? Advocate your case to politicians.
Currently, legislation is moving through Congress that sheds light on the plight of caregivers, including caregivers of individuals with Alzheimer's disease. Senator Barbara Mikulski (D-MD), for one, has been continuously pushing for the Family Assistance Act, which would provide a phased-in tax credit for family caregivers to help pay for care needs and allow a tax deduction for long-term care insurance premiums.
In addition, Representative Maxine Waters (D-CA) is sponsoring the Alzheimer's Treatment and Caregiver Support Act, which would provide grants to public and non-profit organizations to improve treatment services for individuals with Alzheimer's disease, and expand training and support services for caregivers.
It's up to us-those involved in the cause and those who live it day in and day out-to speak out and press for passage of these pieces of legislation and others that will relieve some of the stresses-and allow us to focus on what really counts: quality of life.