Caring for someone with Alzheimer's disease (AD) can be challenging, intimidating, even overwhelming at times but always rewarding. Typically, it's a family member who takes on the responsibility of providing that care. Being a caregiver takes an emotional and physical toll as loved ones come to depend on others more and more. Over time people will discover their own methods for contending with difficult behavior and stressful situations. They will find out what works best for them and their loved one. They should do the best they can and never be afraid to reach out for help and support.
Tips for Caregivers
Accept the feelings - Caregivers will experience a wide range of emotions. They worry about how someone deals with the added responsibility of caring for someone with Alzheimer's and what will happen to their loved one if something should happen to them. They might be angry or resentful toward their loved one or other friends and family members who don't have similar responsibilities. However, everything they are feeling is part of being human and a caregiver.
Don't think one person can do it all - As much as caregivers would like to think they can be all things to all people, the truth is they can't. Especially when it comes to caring for someone with Alzheimer's. Without the needed support, they will quickly "crash and burn" and their ability to care for their senior will be compromised. Caregivers should remember to take time to care for themselves. This may well be the most important piece of advice a caregiver can receive. If they can't take care of themselves, how can they take care of someone else? Caregivers need care, too.
Here are some tips that caregivers can use to cope with their responsibilities:
- Take the time to relax whenever feeling overwhelmed.
- Jot down thoughts and feelings to help acquire perspective and release emotions.
- Nourish the spirit by engaging in any activity to feel part of something greater.
- Be on the lookout for signs of depression and anxiety and seek professional help if necessary.
- Stay social by nurturing close relationships and interacting with others.
- Maintain balance in life by doing things that are enjoyable and important.
- Schedule breaks from caregiving.
- Join or reconnect with a religious group, social club or civic organization to broaden the support network.
- Exercise regularly, eat right and get enough sleep.
- Stay away from alcohol and drugs because it's always better to deal with problems with a clear mind.
- Pay attention to one’s own health, and go to the doctor and dentist on a regular basis and keep up with any medical therapy.
Provide long-distance care - Trying to provide care from a distance can increase feelings of guilt and present additional roadblocks. Here are some tips when caregiving from afar.
- Consider subscribing to an electronic alert system (Lifeline®, MedicAlert®) where loved ones wear a small device that can be used to call for help.
- Schedule all medical appointments when in town.
- Ask to be kept current on all medical issues when not around.
- Local services also are available to provide senior home help and transportation or deliver meals (Meals on Wheels).
- A geriatric care manager can offer a range of services to long-distance caregivers that include providing and monitoring in-home help.
Develop a Routine
- Maintain a sense of structure and familiarity. Do things at the same time every day, like getting up, eating meals, bathing, dressing, entertaining company and going to bed.
- Tell loved ones what they can expect even if they might not be able to completely understand. Use different signals to distinguish between day and night. Draw the curtains in the morning to let the sun in and play soft music when it’s time for bed.
- Involve seniors in whatever daily activities they can manage, such as putting their clothes in the hamper or helping with the gardening by watering, weeding or even planting.
Help for Families and Caregivers
Here are several avenues of support for families and caregivers of those suffering from Alzheimer's disease.
Support groups are an essential part of caring for someone with Alzheimer's. These groups provide a safe haven for caregivers to share their feelings, receive emotional and moral support, obtain useful information and connect with people facing the same situation. Consider joining a caregiver support group at a hospital or online or a local chapter of the Alzheimer's Association, or visiting a therapist, social worker, counselor or someone from a place of worship.
Caring for someone with Alzheimer's at home calls for special skills. Training programs such as those offered by the Alzheimer's Association can help someone care for a loved one with Alzheimer's, and learning a new set of communication skills can help reduce frustration as a loved one transitions through the stages of Alzheimer's.
Caring for a loved one at home can be overwhelming. If family members aren't careful, the physical, emotional and financial responsibilities that come with being a caregiver can take their toll. Even the strongest of individuals need help now and then, which is why respite care can be helpful.
Respite care offers invaluable relief to America’s nearly 50 million caregivers by providing a well deserved and much needed break from their daily duties and responsibilities. Just a few hours of relief from the constant care of a senior can make a difference. It can alleviate stress, boost energy level and recharge an emotional battery. Respite care also benefits those being cared for by offering them an alternative to their routine.
Respite care is a win-win experience for everyone.
Caregivers can visit with friends and family members; spend quality time alone relaxing; tend to their own personal needs, schedule appointments and run errands; and rest easy knowing their loved one is in good hands.
The senior also benefits by being able to enjoy a change of scenery and make new friends.
Respite care can be given in the comfort of one’s own home, at a senior day care facility or through a residential program. In-home care may be handled by volunteers, paid employees or a home care agency. This type of respite generally is provided in regular shifts by a single individual or a group of individuals. Someone can schedule one or multiple shifts in a single day for as many days per week as they like. Home respite care allows the senior to stay in familiar surroundings. This is an important consideration for those suffering from Alzheimer’s disease or another form of dementia. Typical services include assisted seniors with daily living activities such as personal hygiene, dressing, feeding and taking their medications, playing games or cards, reading aloud or simply providing companionship. Skilled health care may also be provided at home. It does, however, call for more specialized training and experience in order to tend to any medical needs.
SeniorHomes.com can help someone find home care agencies in a particular area. Many church, community and not-for-profit groups maintain a list of volunteers who can cover short (one to three hour) shifts.
Senior (or adult) daycare facilities are a good source of respite care those who still maintain a moderate level of functionality. These programs accommodate working caregivers and generally are operational during regular business hours. Unlike in-home care, these programs feature scheduled activities that may include sing-alongs, arts and crafts, stretching and range of motion exercises and musical entertainment. Meals and afternoon treats are provided with special attention being paid to any specific dietary requirements. Staff also will assist seniors with tasks such as taking medications and getting insulin shots when necessary.
Residential programs are another respite care option for short-term, overnight or emergency assistance. This type of care is offered through hospitals, nursing or group homes. An overnight stay in one of these facilities usually is not covered by most medical insurance. Long-term care insurance, however, may offset some of the cost.
- If disability coverage is part of someone’s Social Security Insurance, they may be eligible for home health care benefits. Check the local SS office to see the qualifications.
- Medicaid doesn't fund respite care directly but some states use waivers to apply federal funds to offset the costs for those with specific conditions and disabilities. Consult the state’s Administration on Aging website.
- The Veterans Administration provides inpatient respite coverage for up to 30 days per year for qualified veterans. When wartime vets take care of their spouses, funding also is available for in-home services on a state-by-state basis.
- Nonprofit and disability organizations, such as The United Way, the Alzheimer’s Association and other disability-specific organizations, may offer respite funds in the area. Agency care specialists can assist in researching these funds.
- Over one-half of all states allow family members to be paid for providing respite care. Eligibility, manner of delivery and funding vary from state to state. To learn what is available in an area, check Home Care Agencies go to HelpGuide.org.
Here is a list of helpful resources for more information on early Alzheimer's disease for sufferers, their families and caregivers.
24/7 Helpline: 1-800-272-3900
Alzheimer's Disease Education and Referral (ADEAR) Center
Silver Springs, MD
Administration on Aging
Alzheimer's Disease Resources
National Family Caregivers Association
National Council on the Aging
Visit the National Institute on Aging and the National Library of Medicine's senior-friendly website for more health information for older adults. The site's special features allow users to click on a button to have the text read out loud or to enlarge the type.
Written by home care expert Mary S. Yamin-Garone.