Tips for Caregivers and Families of People with Dementia

A caregiver, sometimes referred to as a caretaker, is anyone who provides care for another person. Millions of people living in the United States take care of a friend or family member with Alzheimer's disease or a related dementia. Sometimes caregivers live with the person or nearby, other times they live far away.

For many families, caring for a person with dementia isn't just one person's job, but the role of many people who share tasks and responsibilities. No matter what kind of caregiver you are, taking care of another person can be overwhelming at times. These tips and suggestions may help with everyday care and tasks.

Everyday Care

Early on in Alzheimer's and related dementias, people experience changes in thinking, remembering and reasoning in a way that affects daily life and activities. Eventually, people with these diseases will need more help with simple, everyday tasks. This may include bathing, grooming and dressing. It may be upsetting to the person to need help with such personal activities.

Here are a few tips to consider early on and as the disease progresses:

• Try to keep a routine, such as bathing, dressing and eating at the same time each day;

• Help the person write down to-do lists, appointments and events in a notebook or calendar;

• Plan activities that the person enjoys and try to do them at the same time each day;

• Consider a system or reminders for helping those who must take medications regularly.

• When dressing or bathing, allow the person to do as much as possible;

• Buy loose-fitting, comfortable, easy-to-use clothing, such as clothes with elastic waistbands, fabric fasteners or large zipper pulls instead of shoelaces, buttons, or buckles;

• Use a sturdy shower chair to support a person who is unsteady and to prevent falls. You can buy shower chairs at drug stores and medical supply stores;

• Be gentle and respectful. Tell the person what you are going to do, step-by-step while you help them bathe or get dressed; and

• Serve meals in a consistent, familiar place and give the person enough time to eat.

Communication and Behavior

Communication can be hard for people with Alzheimer's and related dementias because they have trouble remembering things. They also can become agitated and anxious, even angry. In some forms of dementia, language abilities are affected such that people have trouble finding the right words or have difficulty speaking. You may feel frustrated or impatient, but it is important to understand that the disease is causing the change in communication skills.

To help make communication easier:

• Reassure the person. Speak calmly. Listen to his or her concerns and frustrations. Try to show that you understand if the person is angry or fearful;

• Allow the person to keep as much control in his or her life as possible;

• Respect the person's personal space;

• Build quiet times into the day, along with activities.

• Keep well-loved objects and photographs around the house to help the person feel more secure;

• Remind the person who you are if he or she doesn't remember, but try not to say, "Don't you remember?";

• Encourage a two-way conversation for as long as possible; and

• Try distracting the person with an activity, such as a familiar book or photo album, if you are having trouble communicating with words.

A Healthy and Active Lifestyle

Eating healthy and staying active is good for everyone and is especially important for people with Alzheimer's and related dementias. As the disease progresses, finding ways for the person to eat healthy foods and stay active may be increasingly challenging.

Here are some tips that may help:

• Consider different activities the person can do to stay active, such as household chores, cooking and baking, exercise, and gardening. Match the activity to what the person can do;

• Help get an activity started or join in to make the activity more fun. People with dementia may lack interest or initiative and can have trouble starting activities. But, if others do the planning, they may join in;.

• Add music to exercises or activities if it helps motivate the person. Dance to the music if possible;

• Be realistic about how much activity can be done at one time. Several short "mini-workouts" may be best;

• Take a walk together each day. Exercise is good for caregivers, too!;

• Buy a variety of healthy foods, but consider food that is easy to prepare, such as premade salads and single portions; and

• Give the person choices about what to eat, for example, "Would you like yogurt or cottage cheese?"

Home Safety

As a caregiver or family member to a person with Alzheimer's or related dementias, you can take steps to make the home a safer place. Removing hazards and adding safety features around the home can help give the person more freedom to move around independently and safely, including:

• If you have stairs, make sure there is at least one handrail. Put carpet or safety grip strips on stairs, or mark the edges of steps with brightly colored tape so they are more visible;

• Insert safety plugs into unused electrical outlets and consider safety latches on cabinet doors;

• Clear away unused items and remove small rugs, electrical cords, and other items the person may trip over;

• Make sure all rooms and outdoor areas the person visits have good lighting;

• Remove curtains and rugs with busy patterns that may confuse the person; and

• Remove or lock up cleaning and household products, such as paint thinner and matches.

Taking Care of Yourself

Being a caregiver can be extremely rewarding, but it can also be overwhelming. Caring for a person with Alzheimer's or a related dementia takes time and effort. It can feel lonely and frustrating. You might even feel angry, which could be a sign you are trying to take on too much. It is important to find time to take care of yourself.

Here are some tips that may offer some relief:

• Ask for help when you need it. This could mean asking family members and friends to help, or reaching out to local services for additional care needs;

• Eat nutritious foods, which can help keep you healthy and active for longer;

• Join a caregiver's support group online or in person. Meeting other caregivers will give you a chance to share stories and ideas and can help keep you from feeling isolated;

• Take breaks each day. Try making a cup of tea or calling a friend;

• Spend time with friends and keep up with hobbies;

• Get exercise as often as you can. Try doing yoga or going for a walk;

• Try practicing meditation. Research suggests that practicing meditation may reduce blood pressure, anxiety and depression, and insomnia; and

• Consider seeking help from mental health professionals to help you cope with stress and anxiety. Talk with your doctor about finding treatment.

Planning for the Future

Making healthcare decisions for someone who is no longer able to do so can be overwhelming. That's why it is important to plan healthcare directives in advance. To help plan for the future, you can:

• Start discussions early with your loved one so they can be involved in the decision-making process;

• Get permission in advance to talk to the doctor or lawyer of the person you're caring for, as needed. There may be questions about care, a bill or a health insurance claim. Without consent, you may not be able to get needed information;.

• Consider legal and financial matters, options for in-home care, long-term care, and funeral and burial arrangements;

Learning about your loved one's disease will help you know what to expect as the dementia progresses and what you can do.

Questions?

Contact the Alzheimer's & related Dementias Education & Referral Center, a service of the National Institute on Aging at the National Institutes of Health. Call 800-438-4380 or email adear@nia.nih.gov to talk with an information specialist.

This content is provided by the National Institute on Aging (NIA), part of the National Institutes of Health.