Hearing the phrase Its Alzheimers is a scary, gut-wrenching thing for we baby boomers. Whether the diagnosis is our's, our spouse's/significant other's or its our parent's.
According to Jim McAleer, CEO for the Orange County, California chapter of the Alzheimers Association, OrangeCounty has over 66,000 residents who have some form of dementia and of those, 70% have Alzheimers. In the U.S. over 5.3 million Americans are affected and nearly 10 million more are serving as their caregivers.
That number will double by 2030. One in six will have dementia by age 64. Obviously, this is an epidemic.
Handling the diagnosis and coming up with a plan is yet another enigma for those of us who will have to assist or make those decisions for close family members.
Deborah OConnor, Vice President of Programs and Education for the Alzheimers Association Orange County Chapter and colleague Donna Velarde, LCSW, Early Stage Coordinator, have some suggestions to help guide us through the difficult, not one-size-fits-all process.
Whether its your parents who need help dealing w/ their spouse's diagnosis, but won't accept it or us, trying to help our own mate-what can we do? Is there a way to circumvent the patients agitation?
OCONNOR: Because each family is unique-we need to hear from them about their concerns and needs. Through a dialogue with family members we can identify the resources and assistance most appropriate for them.
VELARDE: Working with families and trying to help family members become educated is the initial step in forming a plan for coping and a plan for the future. With all the calls being made to the 24/7 HelpLine (800-272-3900), what do you hear is the hardest thing to deal with, why and what do you recommend?OCONNOR: Families often come to us not knowing what to do, especially when they are dealing with denial and agitation. We help them identity the challenges, discuss what they have tried, and work collaboratively and creatively for solutions. Families may need to try different things before being successful.VELARDE: One of the most difficult issues for a person with memory loss is losing driving privileges. This affects the persons life style and feeling of independence. We try to help by suggesting other means of transportation, besides family members, so some independence can be preserved.OCONNOR: For those, who become fixated and have trouble letting go, their behavior may make it difficult for their caregiver or spouse to do much else including sleep. Both the person with dementia and the caregiver can quickly become sleep deprived. VELARDE: When a person becomes fixated on something, it is usually very anxiety provoking for everyone involved. Taking that into consideration, family members can show empathy for the person, trying to alleviate the anxiety through reassurance that they understand the person is upset, suggesting they will discuss it further at another time, and utilizing distraction such as getting a snack, looking at photos, etc.
OCONNOR: Helping the person with dementia become engaged in an activity can be helpful in shifting the fixation onto something more positive. This could be a hobby such as art, cards, folding clothes or anything that engages them and has a calming effect.If you are the child and its one of your parents? In other words-lets say Dad is the affected parent and Mom wont accept help-how can you still give support without interfering?VELARDE: If the parent/caregiver is resistant to accepting help from family members, an adult child can try to reassure the parent/caregiver that they are attempting to meet the standards of caring that the parent used in their up-bringing. Again, education is the most powerful component. With all this said-what about as time goes on and outside help or placement into a specialized facility is needed. For those who have been fortunate enough to save the funds-its no problem. But for those who havent-is there help?OCONNOR: If the patient is eligible for MediCal or Veterans benefits, then yes, Id ask for help. However, if not, then daycare and in-home care can be helpful. The family may also reach out to family, friends and their church for support in caring for their loved one.Legalities make it impossible to talk to doctors without the patients okay. If were a spouse we could find a way to speak with the provider-but if were the child, what can we do, especially if our parents refuse to allow us into appointments?
OCONNOR: The doctor may not be able to share privileged information with family members, however, offering observations and concerns are often welcomed by caring physicians.VELARDE: Although the doctor cannot speak with family members without permission, a message can be left with the doctor, explaining the familys concerns and recent events that should come to the doctors attention.The Alzheimers Association has many programs and education opportunities available. Help is offered in planning ahead, care options, coordinating care and support, resources and even information on new treatments.For more information log onto: www.alz.org or call 800-272-3900, which is available 24/7. For information on available treatments and trials, log onto www.TrialMatch.org============About the Author: Carine Nadel writes frequently about health.Have you had experiences with Alzheimers that you want to share? Comment below.
