How to Care for an Alzheimer’s Patient As a Family

Millions of people worldwide suffer from Alzheimer’s disease (AD), and the numbers will only keep growing as the average lifespan increases. Caring for Alzheimer’s patients can be incredibly challenging as the disease progresses, and the burden usually falls upon one or more family members. If you are trying to provide care as a family for a loved one with AD, the challenges of care can be compounded by disagreements, miscommunication, jealousy, anger, and a host of other issues that may erupt. In order to care for an Alzheimer’s patient as a family, you need to plan and work as a team, ensure that care needs are continually met, and understand that even a whole family of caregivers can be overwhelmed at times by this punishing disease.

EditSteps

EditWorking Together

1. Hold a family meeting. If you are a family that communicates openly, honestly, and regularly, you will need to put those attributes to use to care for your loved one with AD. If you aren’t such a family, you’ll need to work on developing those skills as well. You have to have an open, frank, and ongoing discussion about your loved one’s care needs, plans, and wishes.^[1]
   
   • In the best case scenario, you will hold this discussion while the person diagnosed with AD can still be a full participant. He or she should be given the opportunity to express his or her care preferences, along with questions, concerns, and fears.
   • This is an important enough conversation that a separate, single focus family meeting should be scheduled. Don’t try to shoehorn it in before dessert at Thanksgiving dinner.
   • Have a calm discussion about what type of care is needed for both the present and future. Having this conversation will provide a base for avoiding confusion in the future.
   • Have your family think about their schedules, as well as how to adapt them and coordinate with the primary caregiver for holidays and vacations.
   • Each family member should consider their own strengths and skills that they can offer.
   • Be sure to show appreciation, reassurance, and positivity to the primary caregiver. This person needs a special amount of support.
   • Think about your family's current limits financially, emotionally, and personally.
   • Consider getting a professional care manager. These people are usually licensed nurses or social workers specializing in care for older adults.
2. Divvy up responsibilities in a practical manner. Almost inevitably, one person (often a spouse or child) becomes the single primary caregiver for a loved one with AD, no matter how involved others intend to be. Try to divide responsibilities among family members fairly, but also accept that practical matters like available time, proximity, and individual skills must play key roles in the process.^[2]
   
   • For instance, a sister who lives 100 miles away should probably not be the day-to-day primary caregiver, while a brother who can’t balance his own checkbook probably shouldn’t be in charge of getting the financial, legal, and medical documents in order.
   • Create a “care notebook” that can be distributed and regularly updated. An actual, old-fashioned binder will do, but you'll probably find a virtual "notebook" that can be remotely accessed more practical. Regardless of format, it should include important information on the Alzheimer’s patient’s care (medications, doctor information, etc.) as well as an agreed-upon breakdown of individual care responsibilities among family members.^[3]
   • If at any point you feel an overwhelmed, seek help from a friend or a professional, such as social worker or geriatric care manager. Your family and other geriatric care professionals should work together as a team to find solutions for taking care of your loved one with Alzheimer’s disease.
3. Address important legal, financial, and healthcare matters. In some respects, caring for a loved one with AD is similar to providing end-of-life care over what can be a significantly longer period. In either instance, dealing with lots of important paperwork (and making important decisions) is a component of the caregiving process. Make sure you discuss important legal, financial, and healthcare matters with the gathered family, and include the Alzheimer’s patient if his or her condition permits an active role.
   
   ^[4]
   • Beyond issues like making sure bills are paid and various policies and plans are kept up-to-date, you should make sure your loved one has both a valid will and a living will (which designates healthcare wishes, among other things).
   • While it can sometimes cause disagreements and hard feelings, it is often best if an individual family member is granted a durable power of attorney (to make important legal and/or financial decisions), and that the same or another individual family member is appointed the AD patient’s healthcare proxy. All family caregivers should have input, but sometimes there needs to be a single “decider.”
   • Find resources in your area or online that will give you information about putting the important paperwork together and having a durable power of attorney for health care and asset management. You can look online at the websites of the Family Caregivers' Alliance and National Academy of Elder Law Attorneys (for estate planning).
4. Stick together in the face of changes and challenges. Even if your family gets along quite well, expect disagreements and arguments when caring for a loved one with AD. The realities of caregiving alter existing family dynamics, and can bring longstanding tensions or new disputes to the surface. When times get tough, keep the main goal in mind — providing the compassionate care that your loved one deserves after a lifetime of caring for you.^[5]
   
   • Express your feelings and opinions openly and honestly in regular gatherings, and respect the perspectives of other family caregivers. If there are differences that cannot be overcome, seek the assistance of an outside facilitator — such as a counselor, clergy member, or perhaps the AD patient’s doctor.^[6]
   • As an example, deciding if and when an Alzheimer’s patient should leave home and move into some type of care facility can often cause family friction. Opinions among family members are bound to vary and be difficult to adjust. Seeking the counsel of someone with experience dealing with Alzheimer’s patients may help facilitate compromise.^[7]
   • You can also find a support group for caregivers. Support groups can help you realize that you are not alone. Many other families are also going through similar experience. You can find both live and online supports groups; look at The Alzheimer's Association website to find one near you.
5. Spend time together as a family. The constant care demands of advanced Alzheimer’s patients, in particular, may make your other family members feel more like fellow caregivers (working different shifts) than siblings, cousins, etc. Seize opportunities to spend time together under enjoyable circumstances like holiday gatherings or birthday parties. Leave your frustrations and disagreements as caregivers aside for a few hours.^[8]
   
   • Involve your loved one with AD in these gatherings whenever possible. Make sure he or she is still treated as a living, breathing, full member of the family. Make practical adjustments when having gatherings at home (like perhaps limiting the number of visitors at any one time or scheduling events earlier in the day, when most AD patients do better) or in public places (like choosing a restaurant that is familiar and accessible to your loved one).
   • It is important to remind yourself that the disease, not the person with AD, presents challenges to your life and family. Keep things in perspective, and find humor when you can.

EditProviding Care

1. Create a safe living environment for your Alzheimer’s patient. As the mental and physical decline associated with Alzheimer’s moves along its irregular but inevitable path, the risk of injuries due to accidents or confusion will continue to grow. Work as a family to identify and address safety concerns in your loved one’s home — or at whatever location it is that he or she now calls home.
   
   • Make changes such as removing trip hazards, locking away sharp or dangerous objects, and adding bright colors and large-print signs (such as a “TOILET INSIDE” sign on the bathroom door) to make the residence safer and more suited to the AD patient’s needs and abilities.
   • Reassure your family member with AD that they are safe and that you are there to help. These reminders should be really kind and helpful, especially when the person is confused or upset.
   • Provide comfortable shoes with good traction. Clear out any walking spaces in the house that might cause your family member with AD to stumble or fall. Some potential hazards you might move are rugs and doormats.
2. Stick to routines. Confusion is one of the hallmark symptoms of AD, and it can lead to fear, anger, and hostility on the part of the patient. Setting and keeping a regular daily routine helps keep things more familiar, and may help to limit confusion and anxiety at least to some degree.^[9]
   
   • Keep things simple. You should map out a daily routine for you and your family. If it helps, create a schedule that outlines the entire day, with each family member's responsibilities marked clearly.
   • You can vary activities — a puzzle one day before lunch, looking at photo albums the next — but try to keep a consistent daily schedule (wake up, get dressed, eat breakfast, take pills, do some light exercises, listen to some music together, etc.). Identify each activity in the daily routine for your loved one.
   • Make sure, in particular, that dressing, eating, and bathing times remain consistent. Changing these routines can be really challenging for someone with AD.
   • Be careful of "sundowning." Sundowning often occurs for AD patients at night and consists of the person experiencing restlessness and agitation as the sun goes down. Be prepared for this. In the evening, foster a calm and quiet atmosphere. Keep the lights low, reduce the noise level, and play soothing music. Try playing music from the time of your loved one's youth to help lessen confusion and agitation.
   • Try to minimize naps.
   • Make time for exercise, such as light walking, so that your loved one with AD can have a more restful night's sleep.
   • Try to ensure that all caregivers are following similar routines for the sake of consistency. Communicate with your other family members regularly on this topic.
3. Encourage two-way communication. Each case of Alzheimer’s progresses differently, but patients eventually lose a significant amount of their communication skills, especially verbal ones. Even once it begins to be a challenge to understand what your loved one is trying to say, keep talking with — not at — him or her. Learn to pick up on non-verbal communication cues, like facial expressions and hand gestures, as well.^[10]
   
   • Tell family members and visitors to talk to your loved one with AD, even if a coherent conversation is impossible. Remind them not to speak as though the person isn’t there.
   • Be aware of the tone and pitch of your voice. Do your best to sound calm and respectful, even if you are frustrated.
   • Be patient with your loved one's angry outbursts. Remind yourself that this is the result of the disease.
   • Take a "timeout" if you get frustrated. Leave the room and sit outside for a few minutes. Do some deep breathing to calm yourself down.
   • Ask questions that require a "yes" or "no" answer.
   • Allow extra time for your loved one to listen to you.
   • Talk to your family member in a well-lit room.
   • Face the person as your are talking to them.
4. Show and demand respect for your loved one as a person. In addition to talking as though an AD patient is not present in the room, people sometimes (and usually without any malicious intent) lose sight of treating AD patients with dignity and respect. They might, for instance, change soiled clothing in plain view of others. Remind yourself and others that no matter the progression of the disease, the patient is still a person — and a very important person to you.^[11]
   
   • Work together as a family of caregivers to ensure that basic hygiene and grooming efforts are kept up, especially if your loved one took special pride in his or her appearance. When it comes to clothing, for instance, emphasize comfort and simplicity in getting items on and off, but don’t allow your loved one to sit in the same dirty clothes for days.
5. Accept that an irregular but ongoing decline will occur. Alzheimer’s at present cannot be cured, stopped, or substantially delayed, and your loved one’s condition will continue to worsen. The transition from mild to moderate to severe AD can happen quickly, or can take many years. Take measures recommended or approved by your loved one’s medical team to try to delay the worsening of symptoms, but accept that your primary goal as a caregiving family will inevitably be to create as comfortable and loving of an environment as possible.^[12]
   
   • Whether or not it can actually help delay the worsening of the disease, keeping an Alzheimer’s patient physically, mentally, and socially active as long as possible will provide benefits to your loved one and you as a caregiver. See How to Help Alzheimer’s Patients Stay Active for specific advice on this topic.
6. Be aware of your loved one's needs. People with AD can often have bouts of aggression and irritation. Sometimes these are related to AD, but they could also stem from a range of other things. Keep an eye out for the following things that could be making your loved one upset:
   • Pain
   • Constipation
   • Excessive caffeine
   • Lack of sleep
   • Soiled hygiene pad

EditGetting More Help

1. Don’t feel guilty about living your life. No matter how many family members are “pitching in,” caring for someone with Alzheimer’s is physically, mentally, and emotionally draining. Some forty percent of people providing a loved one with AD care experience signs of depression at some point. Everyone needs a break sometimes, and everyone needs help sometimes.^[13]
   
   • Keep in regular contact with other caregiving family members, and let them know when it is all getting to be too much for you. See if someone else in the group can cover for you for a short period of time.
   • Also, don’t feel as though every free second you have beyond your own work, family, and other responsibilities must be dedicated to caregiving. You have to have some time for yourself and your life, or your caregiving for your loved one will suffer.^[14]
   • Learn how to manage stress. Take five deep breaths. Learn to do yoga or meditate.
   • Take care of yourself. Make sure that you are on top of getting your regular checkups and are exercising, eating, and sleeping well.
   • Recognize signs of stress as a caregiver. These signs include denial, anger, social withdrawal, anxiety about the future, depression, exhaustion, sleeplessness, irritability, lack of concentration, and health problems. Burnout can damage the health of both yourself and your loved one with AD, so be sure to recognize these signs. If you are feeling burnout, communicate that feeling to your other family members so that they can give you a break for a day.
2. Don’t wait to be asked to help a fellow caregiver who is struggling. When you need some help or time away, ask for it; when you sense that another caregiver needs the same, offer your help. Working as a team means anticipating needs and offering whatever contributions you can to support the larger goal.^[15]
   
   • As members of the same family and caregivers for the same loved one, set aside petty differences whenever possible and approach each other with compassion and understanding. Do what you can to help each other, which is certainly what your loved one with AD would have wanted of you.
3. Seek outside assistance with caregiving. No matter how good your intentions, how great your energy levels, and how determined you are to see things through as a family, the time may well come when caring for an Alzheimer’s patient is simply too much for your family group. There is absolutely no shame in this. Always focus on what is best for your loved one with AD, even if that means turning over some amount of care to trained professionals. Outside assistance options for AD patients include but are not limited to:^[16]
   
   • Respite care providers, who will provide full-time care for your loved one for a predetermined (short) period of time, so that you and other family members can get some rest and energy.
   • Meal service providers, who bring prepared food to your loved one’s home on a regular schedule.
   • Adult day care programs, which supervise activities for AD patients according to an established schedule.
   • Home healthcare providers, who can provide services ranging from occasional home visits to 24/7 in-home care.
   • Geriatric care managers, who make regular home visits and offer care suggestions and assistance in coordinating needed services.
4. Bring your family member with AD to the doctor regularly. Bring your loved one to the doctor every 2-4 weeks, especially in the early stages of treatment. In these sessions, the doctor may still be adjusting medication and answering your questions. After those initial stages, bring your loved one to the doctor ever 3-6 months. The doctor will be assessing your family member with AD in different areas: activities of daily living, cognition, comorbid medical and mood disorders, and caregiver status.
   • The doctor will also be assessing your family, helping you cope, and directing you to resources. They will do their best to help you cope with and manage your stress about your family member with AD.
5. Find a caregivers’ support group. You can find comfort, support, and assistance within your family group of caregivers, but sometimes it may be easier to seek out these things from strangers going through the same type of thing as you. With the growing number of cases of AD, there is also a growing number of available AD caregiver support groups.^[17]
   
   • Don't wait to be asked to help. Try to help your family members whenever you can. Sometimes, even simple things, like helping with chores or taking a walk with your loved one, can make the burden of other caretakers feel much lighter. You want to give other caregivers time to recharge, too.
   • Talk to your loved one’s care team for advice on local caregiver support groups. You can also search for groups online and/or join online support groups. Start your search on recognized sites dedicated to Alzheimer’s care, such as http://www.alz.org/.

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