Dementia

Lifestyle & Management

If you’re caring for someone with dementia, it’s essential that you get information, advice, and, when needed, assistance. You can get help from your physician and other healthcare providers, your local Alzheimer’s Association, and your local Area Agency on Aging. Different providers offer different services, though the services often overlap.

  • Many primary care physicians manage patients with dementia.  However, it is helpful to consult with a geriatrician to help provide a care plan for the dementia, assist with diagnosing and managing other geriatric syndromes, and help to arrange community supports for the patient and their families.
  • Geriatric specialists with training in psychology or psychiatry can assist with behavioral management, particularly when patients are agitated, psychotic, or violent. They are also helpful if individual or family therapy is indicated.
  • A neurologist can be helpful for patients who have parkinsonism, focal neurologic signs, abnormal results from imaging tests, and unusually rapid progression of their dementia.
  • Neuropsychologic consultations can clarify diagnostically complex cases, and clinical psychologists can provide psychotherapy, especially for caregivers.
  • Social workers can provide counseling and contact with community resources.
  • Physical therapists can provide guidance on physical and group activity.
  • Occupational therapists can suggest approaches to maximize the patient’s functioning in daily activities, such as dressing or eating.
  • Nurses can make management suggestions and guide behavior management, feeding, and other care issues.
  • Pharmacists can review medications to minimize medication side effects and can offer practical advice on the administration of medications to patients with dementia.

  • Attorneys can advise on legal matters related to wills, conservatorships, and estate planning. Because most dementias are progressive, patients should be offered an opportunity as early as possible to plan for future incapacity and illness.

Management

There are several strategies that can be used to manage certain common problems in dementia, such as agitation and aggression, nighttime agitation (also known as “sundowning”), difficulty sleeping, and wandering. The following tips often help. You may discover that there are other things you can do that help as well.

To Stay Safe at Home

  • Schedule regular visits with the healthcare provider every 3 to 6 months.
  • Aim for a moderate amount of interesting, stimulating activity. Too little stimulation may lead to withdrawal. Too much stimulation can increase confusion or agitation.
  • If possible, include physical exercise in the daily routine.
  • Make sure there is enough light for the person to see clearly and, if possible, read.
  • Speak in simple sentences and speak in a calm tone of voice.  If necessary, remind the person of the topic of conversation often.
  • When you provide instructions, make sure you tell the person what you want them to do, instead of what you don’t want them to do.  (For example, “please put the trash in the garbage can,” instead of “please don’t put the trash on the floor.”) . 
  • Avoid using slang.  This can be confusing.
  • Use proper names instead of pronouns (for example, “I saw Bob yesterday,” instead of “I saw him yesterday.”)
  • To prevent or reduce confusion, put clocks, calendars, and to-do lists where the person with dementia can easily see them. Newspapers and radio and television news programs may also help in the early stages of dementia.
  • Try reminiscing together and mention pleasant experiences from the past. (This technique is usually helpful in the early stages of dementia. Later, it may lead to frustration and agitation because the person with dementia may not be able to remember past events any longer.)
  • Ask the healthcare provider for advice about handling difficult behaviors.
  • Watch for signs of new medical problems, possible side effects from medications, and behavioral changes.  Report these to the physician and other healthcare providers promptly.
  • Provide regular daily activities in familiar settings.  Follow a predictable schedule so the person with dementia eats and sleeps at approximately the same times each day.
  • Keep in mind that the ability to learn new skills is lost very early in dementia.  Therefore, efforts to “quiz” or re-train a person may make them feel anxious and frustrated. In general, a better approach is to provide them with support to make up for lost skills.
  • Patients with dementia may remove and lose hearing aids. To reduce this risk, it can be helpful to order a loop attached to the hearing aid case.  A piece of fishing line is attached to the loop and the other end of the line is pinned to the patient’s clothing.  This way the aid is not lost when the patient removes it.
  • The need for supervision usually increases as the disease progresses and the person becomes more forgetful and is no longer able to anticipate or avoid dangerous situations. Door locks or electronic guards prevent wandering, and many families benefit from registering with Safe Return through the Alzheimer’s Association. Patient name tags and medical-alert bracelets can assist in locating lost patients. Newer technologies include watches and other devices that incorporate GPS (global positioning system) to monitor the patient’s location.

To Ease Agitation and Aggression

  • Eliminate as many sources of stress in the home as possible.
  • Try playing soothing music to relieve stress.
  • Tasks like bathing may be potentially disruptive. Take the time to complete them slowly and gently.
  • Stay calm, and try simple distractions for agitated or aggressive behavior.
  • If there is a risk that the person with dementia may become aggressive and harm someone, ask the healthcare provider if sedative drugs might be appropriate. Unfortunately, these drugs can increase confusion.

To Manage "Sundowning"

  • In the evening, create a soothing environment, such as a quiet room with low lighting and calming music or a low-key television program.
  • Spend time quietly talking with the person you are caring for.

To Improve Sleep

  • Make sure the bedroom is quiet, dark, and neither too hot nor cold.
  • Treat pain that may be interfering with sleep.
  • Limit daytime naps to 20 to 30 minutes.
  • Cut back on fluids late in the day to eliminate or reduce the need for nighttime bathroom visits.
  • Don’t serve coffee, other caffeinated drinks, or alcohol later in the day, and discourage smoking at night. All of these things interfere with sleep.

To Discourage Wandering

  • Agitation, depression, hallucinations, pain, boredom, and the need to use the bathroom frequently can contribute to wandering. Addressing these symptoms may help to reduce wandering.
  • Lock doors if necessary for safety.
  • Have the person with dementia wear an ID bracelet or pendant in case they do wander.
Don’t allow a person with dementia to drive.

Caregiver and Family Assistance

Caring for an older person with dementia can be extremely rewarding. But it can also be extremely difficult and stressful. Caregivers need information, support, and help.

It’s important for caregivers to understand how dementia will affect the person they’re caring for, and what kind of medical and related care will be needed. It’s also important for caregivers to care for themselves and to get assistance when needed, so they can avoid burnout.

Use our Caregiver Health Self-Assessment Questionnaire to evaluate your own health.

Joining a caregiver support group can help. So can getting respite care. Respite care options include community adult daycare programs and in-home services. Community organizations, churches, temples, and long-term care facilities near your home may run adult day care centers or offer in-home adult care. In-home care services include companion services, personal care, and home health aide services. 

A caregiver may ultimately have to consider placing a family member in a long-term care facility. Though difficult, it’s important to consider such a move earlier rather than later, so there is enough time to make arrangements. Medicare and Medicaid may cover certain long-term care costs under certain conditions. While private long-term care insurance will cover some costs that Medicare doesn’t, it can be quite expensive.  

 

Last Updated September 2017