Much has changed in the more than 25 years that I have been on staff, but one thing remains the same: a diagnosis of Alzheimer’s or another dementia hits like a bombshell. It destroys futures, devastates dreams and rewrites the script for the final acts of our lives.
Caregivers often feel helpless and hopeless. Unfortunately, medical science has not progressed to the point where we have therapies to cure the disease or stop the progression.
What has changed? We know much more about caring for a person with dementia and, equally important, we know more about the importance of caring for the caregiver. Our knowledge, based on and supported by empirical evidence, shows that when families talk with dementia care specialists soon after a diagnosis, outcomes improve. Family caregivers report less depression, less stress, and improved well-being. The person with dementia does better as well, and healthcare costs are reduced.
Government is beginning to acknowledge the importance of family caregivers. New York State has recognized the value of care and support for Alzheimer’s families. Governor Cuomo approved the largest single allocation of state dollars in the nation for this purpose, and we are pleased to be the recipient of a number of grants from the state to expand our care and support services.
The New York City Council Speaker Melissa Mark-Viverito, Committee on Aging Chair Margaret Chin, and Council Members Debi Rose, Annabel Palma and Ydanis Rodriquez have introduced legislation that would address the needs of “informal” or family caregivers in New York City. CaringKind was pleased to provide testimony supporting this legislation.
The federal government is also focused on the issue. The National Alzheimer’s Plan has recommendations that support this effort nationally. A new bill, the Alzheimer’s Beneficiary and Caregiver Support Act, if passed, will authorize Medicare to conduct a demonstration program with caregiver support and counseling to provide relief to millions of unpaid family caregivers.
If you or someone you know is concerned about a person with dementia, you don’t have to go it alone. We know that many caregivers are isolated; many friends and family members are no longer in touch and as caregiving takes up more and more time, there is less time to maintain these important social and family relationships. We can help.
Call our 24-hour Helpline at 646-744-2900. Talk to a caring professional who will listen and provide confidential guidance and support, as well as connections to the extensive resources of CaringKind and our community partners and services.
Come to an education meeting. Knowledge is power; the more you know, the better you will be able to care for your family member and for yourself, and the better prepared you will be for the future. Attend a Family Caregiver Workshop to learn the skills of good dementia care.
Join a support group. Support group members tell me all the time that once they joined, they were able to keep their head above water. There is no substitute for sharing with others who are going through similar situations. The sense of relief and community is palpable and healing.
Enroll your relative (and yourself) in the MedicAlert® NYC Wanderer’s Safety Program and get peace of mind. Even the most vigilant caregiver can’t watch their relative every second of every day. Wandering is real, serious, and life-threatening. Enrolling in the program connects you to a 24-hour network of support and response in the event someone goes missing.
Speak to a CaringKind social worker who will help you navigate the complex system of long-term care and provide support to deal with the complicated issues of dementia caregiving, as well as the day-to-day priorities of family and professional life.
Call us. We can help. You don’t have to do this alone.
P.S. Please see our Year-End letter. We hope you will support us so that we can continue to expand our reach to all who need us in New York City.