Every year, the Alzheimer’s Association releases a report on the impact of Alzheimer’s dementia in this country. As you would expect, the information it contains is compelling . As I work regularly with formal and informal caregivers of those with Alzheimer’s and other dementia, I was drawn to the section of the report that deals with them specifically.

Although I have worked with various companies and agencies throughout New England, I live in Stonington, Connecticut so my primary area of service is Connecticut and neighboring Rhode Island. One of the many valuable features of this report is the number of informal or “at home” caregivers of those with Alzheimer’s in each State. The most recent information shows that, at this writing, there are 178,000 informal caregivers in Connecticut and 53,000 in Rhode Island. As I looked deeper into the caregiver material in this report, I came across some information that I think formal and informal caregivers will find valuable.

83% of help provided to older adults today is coming from family, friends or other unpaid caregivers. 50% of them are caring for someone with Alzheimer’s or some other forms of dementia. 34% of them are 65 years old or older; 2/3rds of them are women and 1/3rd of them are daughters. It’s also important to know that 25% of all dementia caregivers are in the “sandwich generation” which means they are in the middle with demented loved ones on one side and children under the age of 18 on the other. Truth be told, I wish it were that simple. What they don’t cover in this report are the other “domestic complications” that these caregivers are facing. Are they divorced, do they have a troubled teen they’re dealing with or are they also dealing with an adult child that ‘s moved back home and is living downstairs? It’s all part of the big picture and only adds to their care giving burden.

Every time I discuss these numbers with an audience, I can’t help but ask them…”And how many of these at home, informal caregivers were put on this earth to be caregivers?” As majoring in Mathematics is not in my DNA, the ability to be an excellent care giver is not a gift everyone has.

Alzheimer’s is a progressive disease and sadly things will only get worse for your loved one as time moves on. It’s important to remember that no two afflicted individuals will track the same. In other words, some will display behaviors that others never will. Only 60% will wander, some may become paranoid or delusional while others remain relaxed and secure and others may have trouble eating while others still, never miss a meal.

Part of this report that I found particularly valuable are the Care Giving Training Resources. They are free and they offer information as well as advice. Simply go to the Alzheimer’s Association web site at www.alz.org and look for the Facts and Statistics Report. Under Caregivers you’ll find information on Activities, Communication, safety, the importance of education, stages and behaviors and planning ahead. As I mentioned Alzheimer’s is a progressive disease so things are going to change and as a rule, they don’t change quickly. What you may not have been worrying about them doing yesterday, may become a huge issue today. Being proactive about a short and long term strategy of caregiving means you won’t be “flying by the seat of your pants.” Where will you be able to get more help when you need it? Is it time to research alternative living arrangements? These are steps you don’t want to be making in “crisis mode.”

Finally, I’ll beat the drum again about taking care of you. The mortality rate of those at home care givers is 63% greater than it is for non caregivers of the same age. An informed care giver is a better caregiver and that’s a good thing for all involved.

Questions? Email me at repe@careforcaregivers.org. Join the Journey.