More than 5 million Americans have Alzheimer's Disease, according to the Alzheimer's Association, and almost 11 million people are unpaid caregivers to someone with Alzheimer's -- usually family members. Taking care of someone with dementia can be frustrating, lonely and heartbreaking. But there is help, and hope. Experts urge caregivers to reach out for support, and offer these tips for coping.
Dr. Richard Isaacson, University of Miami Miller School of Medicine, author of Caregiver support is essential.
If stress and fatigue begin to affect the caregiver's own health and well-being, the patient's condition will also decline. I advocate for a social worker to get involved early, and I spend a great deal of time with patients to make sure that the caregiver has adequate support.
I also emphasize quite strongly something that I learned from my cousin Cynthia, who did an amazing and admirable job caring for my Uncle Bob. I try to convey to caregivers that it is okay to let people help. Taking periodic breaks is essential as it helps to keep up ones strength so they can do more for their loved one later. Some other tips that she taught me were to fold laundry together (especially mixing and matching socks), brush the dog, or collect shells on the beach. As time progresses, additional individual and group activities can be found to both help the caregiver, and give them a well-deserved break.
I suggest reaching out to the Alzheimer's Association ( www.alz.org) as an initial contact. Early and continued caregiver support is essential. I also suggest an evaluation by a licensed clinical social worker, therapist, or geriatric care manager who can help give advice, support, do a home assessment, etc. They can also suggest activity programs within the community and other available resources such as adult daycare and activity programs (when necessary). I also consider a home health assessment and visiting nurse referral to help with medication management across all stages of the disease, especially if there are recent medication changes or if the patient or caregiver is having trouble keeping up with medication management.
There are a variety of support groups all across the country. Each year there are a multitude of educational programs and conferences sponsored by the Alzheimer's Association and other organizations for patients, caregivers, and family members. Try contacting the local chapter by phone or review their website.
Psychologist Dale Atkins, Ph.D.
People with Alzheimer’s are people first. They need to feel valued, be treated with dignity, encouraged and loved.
Many feelings come up when dealing with someone who has Alzheimer’s Disease (or if you suspect your own vulnerability). But in the end, it is all about attitude. Care-giving forces you to examine yourself and your life. It invites you to revisit this particular relationship mindfully, openly and respectfully as you become aware that the past cannot be changed.
Be open and be prepared. Breathe, realize most things are out of your control, expect to be surprised, believe you will handle whatever happens, relax your mind and calm yourself. When your loved one sees you calm and comfortable, they pick up on that mood as well. Smile and let them know you are happy to be with them.
If you understand why your loved one is acting in a certain way, you'll be more likely to respond with skill and patience. Your purpose is to take care of yourself, to bring joy and to find joy. This is more possible when you stay in and focus on the moment.
Here are some practical tips on how to do that:
Focus on what is left, not what is lost. Find a new normalcy and adapt with a positive outlook. Appreciate what you have NOW. Look at photos and tell stories. Avoid saying, “I told you this before.” Avoid tests, which can make the person feel stressed, devalued and insecure. Make sure the person’s basic needs are met (hunger, thirst, bathroom, fatigue). Show the person how to do what they need to do, rather than doing it for them. This helps maintain skill level as well as independence.
Keep yourself and the environment calm and peaceful, with few distractions. Whenever you can, limit visual and noise distractions so the environment is less confusing. Reducing the “noise” of an environment helps keep the mind focused and helps the person follow a thought or an activity without being sidetracked. Interact face-to-face and when you are in a group, keep the group small and help the person follow what is going on. Help them follow conversation with cues such as, “Jim is going to tell us about his new car.”
Keep the person safe and feeling secure. Treat the person as an adult (NOT as a child). Condescension breeds resentment and tension. Try to keep to a scheduled routine. Some days and some situations are better than others. What works one moment may not work the next but keep track of what works. Try music, prayers, dancing, taking walks, petting animals, being in familiar environments, sports, playing cards — even if the game is his or her own “style” (someone who played chess well may enjoy moving the pieces around the board).
Keep yourself and your loved one physically active and eat healthfully. Exercising (a walk in the neighborhood, at a mall, in a garden; taking a swim) every day gets more oxygen to the brain and reduces the risk for disorders that can lead to memory loss, such as diabetes and cardiovascular disease. And exercise appears to enhance helpful brain chemicals that protect brain cells. Whether you go out to eat or cook at home, overdo it on the vegetables, fruits, whole grains and “healthy” fats. Antioxidants keep the brain cells firing and B vitamins protect and help reduce the risk of cardiovascular disease. Increase foods with Omega 3s for brain health.
Keep your language simple and sentences short. It is difficult for people with Alzheimer’s disease to follow complex thoughts and sentences. Offer reminders. Just speak slowly, clearly, in a natural tone of voice, and keep sentences short and to the point. You can say a lot in few words and have confidence that your loved one is following you. Use the person’s name. A gentle touch helps to keep them connected. Always tell the “plan” and keep it simple: “We will put on your shirt and pants.” "We will go to the grocery store.” Repetition is part of the routine. Consider each time you say something the first — because it is, for them. So keep your anger, sadness, and frustration out of the interaction. Address it; just not in the presence of your loved one. They are not doing this to you. They have a disease which causes them to change. That which was familiar, predictable and comfortable now appears totally different. Things, people and behavior become strange, often scary — on both sides.
. is a licensed psychologist with more than 25 years of experience as a relationship expert, focusing on families, couples, parenting, aging well, managing stress and maintaining balance in one's life. Dr. Atkins has a private practice in New York City