Coping With the Diagnosis of a Loved One's Alzheimer's Disease
Finding out that a loved one has Alzheimer's disease can be stressful, frightening, and overwhelming. As you begin to take stock of the situation, here are some tips that may help:
- Ask the doctor any questions you have about AD. Find out what treatments might work best to alleviate symptoms or address behavior problems.
- Contact organizations such as the Alzheimer's Association and the Alzheimer's Disease Education and Referral (ADEAR) Center for more information about the disease, treatment options, and caregiving resources. Some community groups may offer classes to teach caregiving, problem-solving, and management skills. See page 20 for information on contacting the ADEAR Center and a variety of other helpful organizations.
- Find a support group where you can share your feelings and concerns. Members of support groups often have helpful ideas or know of useful resources based on their own experiences. Online support groups make it possible for caregivers to receive support without having to leave home.
- Study your day to see if you can develop a routine that makes things go more smoothly. If there are times of day when the person with AD is less confused or more cooperative, plan your routine to make the most of those moments. Keep in mind that the way the person functions may change from day to day, so try to be flexible and adapt your routine as needed.
- Consider using adult day care or respite services to ease the day-to-day demands of caregiving. These services allow you to have a break while knowing that the person with AD is being well cared for.
- Begin to plan for the future. This may include getting financial and legal documents in order, investigating long-term care options, and determining what services are covered by health insurance and Medicare.
Communication
Trying to communicate with a person who has AD can be a challenge. Both understanding and being understood may be difficult.
- Choose simple words and short sentences and use a gentle, calm tone of voice.
- Avoid talking to the person with AD like a baby or talking about the person as if he or she weren't there.
- Minimize distractions and noise—such as the television or radio—to help the person focus on what you are saying.
- Call the person by name, making sure you have his or her attention before speaking.
- Allow enough time for a response. Be careful not to interrupt.
- If the person with AD is struggling to find a word or communicate a thought, gently try to provide the word he or she is looking for.
- Try to frame questions and instructions in a positive way.
Choosing a Nursing Home for Someone with Alzheimer's
For many caregivers, there comes a point when they are no longer able to take care of their loved one at home. Choosing a residential care facility—a nursing home or an assisted living facility—is a big decision, and it can be hard to know where to start.
- It's helpful to gather information about services and options before the need actually arises. This gives you time to explore fully all the possibilities before making a decision.
- Determine what facilities are in your area. Doctors, friends and relatives, hospital social workers, and religious organizations may be able to help you identify specific facilities.
- Make a list of questions you would like to ask the staff. Think about what is important to you, such as activity programs, transportation, or special units for people with AD.
- Contact the places that interest you and make an appointment to visit. Talk to the administration, nursing staff, and residents.
- Observe the way the facility runs and how residents are treated. You may want to drop by again unannounced to see if your impressions are the same.
- Find out what kinds of programs and services are offered for people with AD and their families. Ask about staff training in dementia care, and check to see what the policy is about family participation in planning patient care.
- Check on room availability, cost and method of payment, and participation in Medicare or Medicaid. You may want to place your name on a waiting list even if you are not ready to make an immediate decision about long-term care.
- Once you have made a decision, be sure you understand the terms of the contract and financial agreement. You may want to have a lawyer review the documents with you before signing.
- Moving is a big change for both the person with AD and the caregiver. A social worker may be able to help you plan for and adjust to the move. It is important to have support during this difficult transition.