Alzheimer’s and dementia is a growing concern for our country. Over 5 million Americans are currently living with Alzheimer’s Disease (AD). The likelihood of getting Alzheimer’s and dementia increases as we age so as people are living into their 80’s, 90’s and 100’s, we are going to experience more people with the disease. Some estimates are as high as 16 million people affected by 2050. This is a problem not only for the people and families experiencing the disease but for our society as a whole.

The newest programs for AD and other dementias not only seek early diagnosis and treatment for the person afflicted but also focus on supporting the caregivers who help those with the disease remain independent for as long as possible. This makes a lot of sense since most people want to stay in their homes for as long as possible. Familiar places are the best for someone with memory impairment, and our national economy can not afford to put everyone with dementia in a nursing home.

Chautauqua County along with seven other counties in WNY, the Alzheimer’s Association and Catholic Charities and the NYS DOH have embarked on a five-year initiative to assist the caregivers of people with AD and other dementias through education, respite, family counseling and other services. Our goal is to support caregivers so that they can keep the person at home and in the community for as long as possible. In our first year we have touched over 100 people and the feedback has been very positive. We are helping families come up with a plan for the future, connecting them with services to prevent caregiver burnout and providing a support system to deal with the challenges of caring for someone with dementia.

The only problem I see is the growing number of people with cognitive impairment who do not have a family, a designated caregiver, or relatives who will take charge of the person or the situation. Complicating the problem is the disease comes on very subtly. The person with the disease usually does not recognize there is a problem. In isolated situations like a doctor’s office they appear fine, and often compensate by getting angry or creating a plausible story when they are challenged about their memory, their judgement, or behavior.

Our society has put personal autonomy and freedom at the core of everything. This right can only be taken away by a lengthy court process or a situation where the person is a danger to themselves or others. That is as it should be but with a growing number of people with cognitive impairment and dementia living in the community without a caregiver how do we protect their personal autonomy while making sure they are safe, not being taken advantage of, and are able to handle finances and other aspects of living alone? How do we protect the person who is sending money to scammers instead of paying their bills or taxes? How do we deal with someone who is still driving who does not remember that their licensed was revoked for driving the wrong way on I-86 or prevent them from buying another car after the first is removed? What does law enforcement do with a person who threatens the strangers in their home when they don’t remember that the house was sold? While OFA, law enforcement, and Adult Protective services try to help in these types of situations it can be very difficult without a diagnosis of cognitive impairment.

It was previously thought that dementia could only be accurately diagnosed after death. However, a new screening toolkit available on the Alzheimer’s Association website is specifically designed to help health care professionals identify cognitive decline in the early stages. Medicare is also behind using the new tools and has included reimbursement for this under the Medicare Annual Wellness visit. As part of our WNY Alzheimer’s Caregiver Partnership (WNYACP), OFA is also working with the University of Buffalo Center for Excellence in Alzheimer’s disease or CEAD. UB’s CEAD is one of several across NY sponsored by the Department of Health to improve screening, diagnosis and treatment of AD and other dementias. The CEAD is not only a place where people can go to meet with a specialist in AD and access the latest treatments but it is also a resource for primary care physicians in our region. The CEAD provides training to primary care physicians and other professionals on how to use current screening tools and newest protocols for treatment. While there is no cure for AD some drugs can slow the progression of the disease. Another important reason to screen is there may be other medical reasons for changes in thinking and judgement that can be treated like those related to heart disease, depression, diabetes and other chronic conditions.

If you are worried about someone who has cognitive decline or to set up and in-service training for your organization on AD and other dementia’s, contact our NY Connects Helpline at 753-4582, 661-7582, or 363-4582. For general information on Alzheimer’s and Dementia visit the Alzheimer’s Association website at www.alz.org.