Coping tips for caregivers of people with Alzheimer’s disease.
There are two main caregiving strategies or goals when looking after a person with Alzheimer’s disease. The first is to help the patient maintain as much independence in daily activities for as long as possible. The second is to reduce or prevent disturbing behaviors.
Helping the patient maintain independence for as long as possible is extremely important in the mild-to-moderate stages of the disease. That independence can help patients feel better about themselves and contribute to a better quality of life. The cardinal rule here is not to do something the patient can do alone. At first, that may mean letting the person dress alone or with minimal assistance in choosing appropriate clothes. Later, it might mean prompting the person to pick up the shirt or even to put an arm through the sleeve.
It’s also important for you to remember as caregiver that you are not alone. Statistics compiled by the Alzheimer’s Association and the National Institute on Aging show nearly 3 million spouses, relatives and friends care for the more than 70 percent of people with Alzheimer’s who live at home. You can find a lot of help and support, starting with the local chapter of the Alzheimer’s Association, your state or local Agency on Aging and the patient’s physician.
What should you do first?
- Educate yourself. Talk to the patient’s doctors. Contact the Alzheimer’s Association and the Agency on Aging. Read books and visit Web sites. Become informed about symptoms, behavioral changes and available treatments, as well as how to be an effective caregiver.
- Inform your family and friends. Family members and friends can help you make decisions and see you through these difficult times if they know about and understand the diagnosis. Openly discuss the patient’s condition, prognosis, care options, finances and how each person can help. It’s a good idea to meet whenever there’s a major change in either the patient’s condition or your needs as caregiver.
- Create a support network. Identify a few close friends and family members you can count on to help you cope as well as care for your loved one.
- Get legal and financial help. You’ll need a lawyer and perhaps a financial adviser to establish power of attorney, to make wills and living wills for the patient and yourself, and to figure out insurance policies. The average cost of using the services of a nursing aid to care for a person with Alzheimer’s at home costs $53,000 a year. The average cost of long-term care in the United States exceeds $70,000 a year, At the present time, the care of patients with Alzheimer’s is viewed as custodial and is not covered by Medicare or most health insurance plans. You can get referrals for lawyers and advisers knowledgeable about the affairs of the elderly from the Alzheimer’s Association and AARP (formerly the American Association of Retired People).
- Keep the person with Alzheimer’s involved. It’s important, especially if the disease has been diagnosed early, to make sure the patient understands his or her condition and to find out what his or her wishes are for treatments, care options, as well as legal and financial matters. Accompany the person when he or she consults doctors, lawyers and financial advisers. If the person is no longer competent in these areas, you’ll have to take on the consulting and decision-making, but try to discuss the issues with the patient as much as possible.
- Plan ahead. Put together a plan to cover the changes in abilities and behavior that you can expect with Alzheimer’s. For example, you know that people with Alzheimer’s often wander, leaving home alone and getting lost in the process. You can plan for this by installing special locks or asking neighbors to be on the lookout.
Where can you get caregiving help?
A variety of services can help with everything from housekeeping to providing physical and occupational therapy for the patient. Out-of-home services, such as adult daycare centers, can help relieve you. The Alzheimer’s Association’s 24/7 Helpline can provide assistance 24 hours a day, seven days a week by calling (800) 272-3900. Also take advantage of community resources that can be coordinated through your physician’s office, the local county health or social services department, or a visiting nurses association. Such services include:
- Home health aides
- Visiting nurses
- Social workers
- Respite care
- Adult daycare centers
- Special care units at nursing homes
- Transportation services
- Alzheimer’s Association support groups
- Small service businesses that can do shopping and chores
Disturbing behaviors – what can you expect?
The progress of Alzheimer’s differs from patient to patient. For most caregivers, the dementia (marked by a decline in mental faculties) of the person they care for is anticipated. The decline may include the failure of memory, reasoning and ability to make decisions. It is the troubling changes in a person’s behavior accompanying this decline that often seem unsettling. What are some of these odd behaviors?
- Wandering: More than 75 percent of people with Alzheimer’s walk or pace with what looks like no purpose at some time during the course of their disease. Wandering can happen during the day or at night, when it’s particularly dangerous to the patient and disturbing to the caregiver. Sometimes, wandering may be a leftover from an earlier time in the person’s life. For example, the person may always have paced when under stress or the person was used to going out at a particular time. Other times, the wandering may be the result of the person’s confusion, perhaps looking for something that’s been misplaced or trying to find the bathroom. Or, the person’s bored or feeling trapped.
- Sleep disturbances: People with Alzheimer’s often are restless at night, getting up to go to the bathroom or because of a bad dream, only to get disoriented in the dark and start wandering. Some may get dressed, try to cook a meal or leave the house.
- Hoarding and hiding things: People with Alzheimer’s who used to collect things may now attempt to save objects such as food and dirty clothes, and hide them in strange locations.
- Repetition: People with Alzheimer’s may ask the same question over and over or repeat a particular action like folding a towel or pacing around in a circle.
- Clinging and following: Like a toddler who won’t let a mother out of sight, a person with Alzheimer’s often follows the caretaker from room to room. This is most likely the result of the need for security in a strange world and the inability to remember the caretaker will return.
- Complaining, insulting and lying about the caregiver: Occasionally, people with dementia complain incessantly about the care they receive either to their caregivers directly or to friends and family who visit. They may also turn on their caregivers, accusing them of trying to poison them or hurting them in some way.
- Sundowning: Behavior problems such as agitation, restlessness and disorientation frequently become exaggerated as evening approaches. This is a psychiatric term known as sundowning. As a mental state, sundowning does not have a known cause, but it may be that the patient is tired at the end of the day, has difficulty seeing in the dark or is disturbed by the increased activity in the household during the evenings.
Psychological and mood problems may accompany these behaviors. Be on the lookout for:
- Depression or sadness
- Apathy and listlessness
- Agitation and nervousness
- Paranoia and suspiciousness
- Hallucinations and delusions
How can you best handle odd behaviors?
The behaviors a person with Alzheimer’s exhibits must be met with patience, self-control, understanding and flexibility, and addressed creatively. Each behavior may need its own solution. Wandering, for example, may require putting special locks on outside doors or creating a safe wandering area. Certainly, anyone with Alzheimer’s who wanders should be registered with the Alzheimer’s Association’s Safe Return Program and wear clothing or jewelry that properly identifies them. Turning on lights or simplifying the routine at night may ease sundowning.
Your local Alzheimer’s Association’s newsletter, support groups and books for caregivers are great sources for solutions to many of these problems. Following are some do’s and don’ts for caregivers:
- Remember the disease causes the behavior and is not the person’s fault.
- Remain calm.
- Be patient.
- Distract with another activity or object.
- Talk to the person.
- Listen to the person.
- Be reassuring and loving.
- Speak in short simple sentences.
- Include the person in fun and family activities.
- Limit choices to two.
- Keep routines simple.
- Break activities into simple steps.
- Praise accomplishments.
- Focus on what the person can still do.
- Avoid situations that trigger bad behaviors.
- Maintain a sense of humor.
- Raise your voice or get angry.
- Act surprised or shocked.
- Be embarrassed.
- Do more for the patient than he or she needs.
- Focus on what the person can no longer do.
Take care of yourself
Caregivers of people with Alzheimer’s can become emotionally and physically overwhelmed. From the sheer physical labor of caring for someone who can’t do ordinary tasks for themselves to the emotional toll of watching a loved one go downhill, your job is extremely stressful, draining and exhausting. It’s important to maintain a delicate balance between the needs of a patient and yourself.
The Alzheimer’s Association cites these 10 warning signs of caregiver stress:
- Social withdrawal
- Lack of concentration
- Health problems
If you are stressed, here are some steps you can take:
- Continue to educate yourself on Alzheimer’s and caregiving techniques. Stay in touch with the patient’s doctor about treatments, and read the Alzheimer’s Association’s newsletters and books on caregiving.
- Talk to other caregivers in a support group. Openly discuss your feelings and concerns and ask them for tips on caring, managing and coping.
- Begin legal and financial planning as soon as possible following the diagnosis and review your plans as the situation changes. Knowing these matters are in order helps relieve anxiety.
- Ask for and accept help from family, friends and community resources.
- Don’t expect to be the perfect caregiver all the time. Arrange ways to give yourself a daily break from caregiving and a longer respite every few weeks. And don’t blame yourself if you lose patience or get annoyed; you’re only human.
- Reward yourself with lunch out with a friend, a shopping trip or something you enjoy that takes you away from the caregiving role, if only for a few hours.
- Take care of yourself by eating right, exercising, socializing and getting enough rest. If the person’s sleeplessness keeps you awake, get someone in during the day so that you can nap.
- Seek a physician’s help if you recognize several of the warning signs of caregiver stress in yourself.