Caregivers for Alzheimer's and Dementia Face Special Challenges
You are not alone. Whether you need information about early-stage caregiving, middle-stage caregiving, or late-stage caregiving, the Alzheimer's Association is here to help.
 In the early stages of Alzheimer's, a person may function independently. He or she may still drive, work and be part of social activities. Your role as care partner is an important one: to provide support and companionship, and help plan for the future.
What to expect
"Early stage" refers to people, irrespective of age, who are diagnosed with Alzheimer's disease or related disorders and are in the beginning stages of the disease. A person in the early stages may experience mild changes in the ability to think and learn, but he or she continues to participate in daily activities and give-and-take dialogue. To others, the person may not appear to have dementia. The early stages of Alzheimer's can last for years.
Your role as a care partner
In the early stages, you may act more like a care partner, than a caregiver.  Your role is one of support, love and companionship. You are there to help with daily life, as needed, and to help the person with Alzheimer's plan for the future. Since no two people experience Alzheimer's alike, the degree of assistance needed from a care partner in this stage varies.
A person with early-stage Alzheimer's may need cues and reminders to help with memory. For example, he or she may need help with:
Remembering words or names
Recalling familiar places or people
Keeping track of medications
Doing familiar tasks
Planning or organizing
Tap into the person's strengths and encourage him or her to continue living as independently as possible. You can help the person stay organized with shared calendars, notes, medication schedules and other reminder systems. Establishing a daily routine and maintaining some regularity will be of benefit.
 The person also will need emotional support. He or she may feel frustrated, anxious, embarrassed or isolated.
You can help by:
Encouraging the person to share his or her feelings, and asking how you can be supportive
Encouraging the person to stay involved in activities he or she enjoys
Helping the person locate a support group for people in the early stages and their care partners
 A diagnosis of Alzheimer's is life changing for both the person with the disease and the care partner
. Here are some of the issues you may both face
Telling others about the diagnosis
Telling others about a diagnosis of Alzheimer's or dementia is one of the most difficult steps for people diagnosed in the early stages and their care partners. There may be anxiety surrounding who to tell and worry about social stigma. Be open with friends and family about the changes that are taking place. Educate them on the disease and tell them how they can be supportive.
Even if changes are small at first, a person with early-stage Alzheimer's will have different needs than he or she did before the diagnosis. Support is critical. As a care partner, you'll need a support system in place, too. You may feel anxiety over how your relationship may change or feel distanced from friends and family. Know that you aren't alone, and that help is available.
Planning for the future
A Plan in Place: Janet is in the early stages of younger-onset Alzheimer's. She's doing well now, but realizes that eventually she'll have to stop driving. Watch as she talks with her family about a future plan.
It's important to have discussions now about topics that will have to be addressed later. As a care partner, one of the most important things you can do is help the person with early-stage Alzheimer's get legal, financial and care plans in place. Doing so allows the person to share his or her wishes for future decisions, and also allows time to work through the complex issues that are involved in long-term care. This is also the time to talk about future safety topics, such as what to do when driving is no longer an option.
People with early-stage Alzheimer's want to stay as engaged and active as possible for as long as possible. As a care partner, you can help foster this by encouraging involvement in daily life and a healthy lifestyle. Staying engaged and healthy is important for care partners as well. Continue being a part of support systems you have in place. Spend time with friends and family. Be a part of activities you love. And don't forget to eat well, exercise and see the doctor regularly.
With support and resources, many people in the early stages of Alzheimer's live independently. If you are a family member or caregiver for someone who lives on his or her own, stay involved. Call or visit every day, and make sure the person gets the assistance needed, such as help with housekeeping, meals, transportation, bill paying and other daily chores. Put home safety measures in place, and be aware of any changes that would indicate the need for additional supervision or care.
 The middle stages of Alzheimer's are typically the longest and can last for many years. As dementia progresses, the person with Alzheimer's will require a greater level of care. During this time, it's important to get the support you need as a caregiver.
During the middle stages of Alzheimer's, damage to the brain can make it difficult to express thoughts and perform routine tasks. You may notice the person with Alzheimer's jumbling words, having trouble dressing, getting frustrated or angry, or acting in unexpected ways, such as refusing to bathe.
While these changes are difficult for everyone involved, resources are available to help both you and the person with dementia as the disease progresses. There will be challenging days, but there also will be good days. As your relationship with the person with dementia changes, you will find new ways to connect and deepen your bond.
Your role as a caregiver
 Being a caregiver for someone in the middle stages of Alzheimer's requires flexibility and patience. As the abilities of the person with Alzheimer's change and functioning independently becomes more difficult, you will have to take on greater responsibility. Daily routines will need to be adapted, and structure will become more important.
As you gain experience as a middle-stage caregiver, you will develop strategies and ways of coping that work for you and the person with dementia. When abilities diminish further, these will need to be modified. The Alzheimer's Association offers educational workshops and resources that can provide you with the caregiving skills needed to deal with changing needs of someone in this stage of the disease. Sharing information with other Alzheimer's caregivers also can be a great source of information and support.
Other caregivers truly understand the complex feelings associated with caring for a person with dementia.
As caregiving responsibilities become more demanding, it's important take care of yourself. Take breaks, even if it is only for a few moments. Make sure not to isolate yourself. Learn what respite services are available in your community, and take friends and family up on offers to help. Since paying for long-term care can be a big concern and source of stress, research all your options, if plans are not already in place.
Changes in behavior
Changes in behavior can be some of the most distressing for caregivers and family members. During the middle stages, people may experience depression, anxiety, irritability and repetitive behaviors. As the disease progresses, other changes may occur, including sleep changes, physical and verbal outbursts, and wandering. Understanding what behaviors are common during this stage and how to assist the person with dementia can help.
As people with Alzheimer's gradually lose their ability to find words, express thoughts and follow conversations, they also have more difficulty understanding others. Communication changes during the middle stages include trouble finding the right word, repeating questions, losing the train of thought, reverting to a native language and relying on non-verbal communication. You can help improve communication by making simple changes, such as speaking slowly and distinctly in a gentle tone. If you notice sudden changes in communication, make sure to contact the doctor, since this could indicate other medical issues or side effects of medication.
Daily care needs
Eating, dressing and grooming will become more challenging as dementia progresses. This loss of independence and privacy can be a very difficult transition for the person with dementia; your patience and sensitivity will go a long way in helping him or her through it. Once your assistance is needed to complete daily tasks, think about the person's abilities. Encourage the person to do as much as possible, but be ready to help when needed. For example, when dressing, you can give direction indirectly by laying out clothing in the order in which item is put on.
Activities that provide meaning
In addition to enhancing quality of life, activities can reduce behaviors like wandering and agitation. You don't need to invent new things to do. Think of activities as things we do as part of our daily living. Activities can be making dinner together, gardening, listening to music or going for a walk.
 During the middle stages of the disease, a person with Alzheimer's will need to stop driving.
When it is clear that driving is no longer safe, try to involve the person with dementia in the decision to stop. Explain your concerns by giving specific examples. Assure the person you will do everything possible to make rides available.
Other safety concerns
Early in the middle stages, it will become too difficult or dangerous for a person with Alzheimer's to be left alone.
Preventing wandering becomes a crucial part of care, and safety precautions will need to be taken throughout the person's living environment. At this point, if the person is living alone, he or she may need to move in with relatives or to a residential care setting. Go to our free online tool, Alzheimer's Navigator, to receive step-by-step guidance on topics including home safety and driving.
 The late stage of Alzheimer's disease may last from several weeks to several years. As the disease advances, intensive, around-the-clock care is usually required.
What to expect
As the disease advances, the needs of the person living with Alzheimer's will change and deepen. A person with late-stage Alzheimer's usually:
Has difficulty eating and swallowing
Needs assistance walking and eventually is unable to walk
Needs full-time help with personal care
Is vulnerable to infections, especially pneumonia
Loses the ability to communicate with words
Your role as a caregiver
 During the late stages, your role as a caregiver focuses on preserving quality of life and dignity. Although a person in the late stage of Alzheimer's typically loses the ability to talk and express needs, research tells us that some core of the person's self may remain. This means you may be able to continue to connect throughout the late stage of the disease.
At this point in the disease, the world is primarily experienced through the senses. You can express your caring through touch, sound, sight, taste and smell.
For example, try:
Playing his or her favorite music
Reading portions of books that have meaning for the person
Looking at old photos together
Preparing a favorite food
Rubbing lotion with a favorite scent into the skin
Brushing the person's hair
Sitting outside together on a nice day
Late-stage care options
 Since care needs are extensive during the late stage, they may exceed what you can provide at home, even with additional assistance. This may mean moving the person into a facility in order to get the care needed.
Deciding on late-stage care can be one of the most difficult decisions families face. Families that have been through the process tell us that it is best to gather information and move forward, rather than second guessing decisions after the fact.
There are many good ways to provide quality care. Remember, regardless of where the care takes place, the decision is about making sure the person receives the care needed.
At the end of life, another option is hospice. The underlying philosophy of hospice focuses on quality and dignity by providing comfort, care and support services for people with terminal illnesses and their families.
To qualify for hospice benefits under Medicare, a physician must diagnosis the person with Alzheimer's disease as having less than six months to live.
Ideally, discussions about end-of-life care wishes should take place while the person with the dementia still has the capacity to make decisions and share wishes about life-sustaining treatment.
Food and fluids
One of the most important daily caregiving tasks during late-stage Alzheimer's is monitoring eating.
As a person becomes less active, he or she will require less food. But, a person in this stage of the disease also may forget to eat or lose his or her appetite. Adding sugar to food and serving favorite foods may encourage eating; the doctor may even suggest supplements between meals to add calories if weight loss is a problem.
To help the person in late-stage Alzheimer's stay nourished, allow plenty of time for eating and try these tips:
Make sure the person is in a comfortable, upright position.
To aid digestion, keep the person upright for 30 minutes after eating.
Adapt foods if swallowing is a problem.
Choose soft foods that can be chewed and swallowed easily. Make liquids thicker by adding cornstarch, unflavored gelatin or food thickeners (available at pharmacy and health care supply stores) to water, juice, milk, broth and soup. Learn the Heimlich in case of an emergency.
Sometimes a person needs cues to get started. Begin by putting food on a spoon, gently putting his or her hand on the spoon, and guiding it to the person's mouth. Serve finger foods if the person has difficulty using utensils.
Assist the person with feeding, if needed.
Alternate small bites with fluids. You may need to remind the person to chew or swallow. Make sure all food and fluid is swallowed before continuing on with the next bite.
Because the sense of thirst diminishes in the late stages of Alzheimer's, the person may not realize that he or she is thirsty. Encourage the person to drink liquids or to eat foods with high liquid content, such as watermelon, peaches, pears or sherbet.
While weight loss during the end of life is to be expected, it also may be a sign of inadequate nutrition, another illness or medication side effects. See the doctor to have weight loss evaluated.
Bowel and bladder function
 Difficulty with toileting is very common at this stage in the disease. The person may need to be walked to the restroom and guided through the process. Incontinence is also common during late-stage Alzheimer's.
To maintain bowel and bladder function:
Set a toileting schedule.
Keep a written record of when the person goes to the bathroom, and when and how much the person eats and drinks. This will help you track the person's natural routine, and then you can plan a schedule. If the person is not able to get to the toilet, use a bedside commode.
Limit liquids before bedtime.
Limit liquids at least two hours before bedtime, but be sure to provide adequate fluids throughout the day.
Use incontinence products.
Adult briefs and bed pads at night can serve as a backup to the daytime toileting schedule.
Monitor bowel movements.
It is not necessary for the person to have a bowel movement every day, but if there are three consecutive days without a bowel movement, he or she may be constipated. In such instances, it may help to add natural laxatives to the diet, such as prunes or fiber-rich foods (bran or whole-grain bread).
Skin and body health
 A person with late-stage Alzheimer’s disease can become bedridden or chair-bound. This inability to move around can cause skin breakdown, pressure sores and "freezing" of joints.
To keep skin and body healthy:
Relieve body pressure and improve circulation.
Change the person’s position at least every two hours to help keep him or her mobile.
Learn how to lift the person.
A care provider, such as a nurse or physical therapist, can provide instructions on how to properly lift the person without causing injury. Make sure not to ever lift by pulling on the person's arms or shoulders.
Keep skin clean and dry.
Since skin can tear or bruise easily, use gentle motions and avoid friction when cleaning. Wash with mild soap and blot dry. Check daily for rashes, sores or breakdowns.
Reduce the risk of bedsores.
Use pillows or pads to protect bony areas such as elbows, heels and hips.
Maintain range of motion in the joints.
"Freezing" of the joints (limb contractures) can occur when a person is confined to a chair or bed. Ask the doctor if range of motion exercises might be beneficial and, if so, how they should be performed.
 Infections and pneumonia
The inability to move around during late-stage Alzheimer's disease can make a person more vulnerable to infections.
To help prevent infections:
Keep the teeth and mouth clean.
Good oral hygiene reduces the risk of bacteria in the mouth that can lead to pneumonia. Brush the person's teeth after each meal. If the person wears dentures, remove them and clean them every night. Also, use a soft toothbrush or moistened gauze pad to clean the gums, tongue and other soft mouth tissues.
Treat cuts and scrapes immediately.
Clean cuts with warm soapy water and apply an antibiotic ointment. If the cut is deep, seek professional medical help.
Protect against flu and pneumonia.
The flu (influenza) can lead to pneumonia (infection in the lungs). It's vital for the person with Alzheimer's as well as his or her caregivers to get flu vaccines every year to help reduce the risk. A vaccine to guard against pneumococcal pneumonia is also available. (Usually only one dose is needed, but in certain circumstances, a second dose may be given five or more years after the first dose.)
Pain and illness
Communicating pain becomes difficult in the late stages. If you suspect pain or illness, see a doctor as soon as possible to find the cause. In some cases, pain medication may be prescribed.
To recognize pain and illness:
Look for physical signs .
Signs of pain and illness include pale skin tone; flushed skin tone; dry, pale gums; mouth sores; vomiting; feverish skin; or swelling of any part of the body.
Pay attention to nonverbal signs.
Gestures, spoken sounds and facial expressions (wincing, for example) may signal pain or discomfort.
Watch for changes in behavior.
Anxiety, agitation, shouting and sleeping problems can all be signs of pain.