Planning and Preparing for the Road Ahead

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Alzheimer's disease can be a challenging journey, not only for the person diagnosed but also for their family members and loved ones as well. Each day can bring new demands and opportunities as you help the Alzheimer's patient try to cope with changing levels of ability and new patterns of behavior. Caring for a loved one with Alzheimer's disease can seem overwhelming at times, but the more information and support you have, the better you can navigate the demanding road ahead. Start by learning about ways to care for a loved one with Alzheimer's disease, as well as where to find support, and how to determine the long-term care options that are best suited to you and your loved one.


PREPARING FOR ALZHEIMER'S AND DEMENTIA CARE


As you come to grips with an Alzheimer's diagnosis, you may be dealing with a whole range of emotions and concerns. You'll no doubt be worried about how your loved one will change, how you'll keep him or her comfortable, and how much your life will change. You'll also likely be experiencing emotions such as anger, grief, and shock. Adjusting to this new reality is not easy. It's important to give yourself some time and to reach out for help. The more support you have, the better you will be able to help your loved one.


Early stage Alzheimer's care preparations

There are some Alzheimer's care preparations that are best done sooner rather than later. It may be hard to consider these questions at first, as it means thinking about a time when your loved one is already well down the road of his or her Alzheimer's journey. However, putting preparations in place early helps a smoother transition for everyone. Depending on the stage of diagnosis, include the person with Alzheimer's in the decision-making process as much as possible. If their dementia is at a more advanced stage, at least try to act on what their wishes would be.

Questions to consider in preparing for Alzheimer's and dementia care:

- Who will make healthcare and/or financial decisions when the person is no longer able to do so? While a difficult topic to bring up, if your loved one is still lucid enough, getting their wishes down on paper means they'll be preserved and respected by all members of the family. Consider meeting with an elder law attorney to best understand your options. You'll want to consider power of attorney, both for finances and for healthcare. If the person has already lost capacity, you may need to apply for guardianship/conservatorship. More information can be found in the resources below.

- How will care needs be met? Sometimes other family members assume that a spouse or nearest family member can take on caregiving, but that is not always the case. Caregiving is a large commitment that gets bigger over time. The person will eventually need round-the-clock care. Family members may have their own health issues, jobs, and responsibilities to other family members. Communication is essential to make sure that the needs of the Alzheimer's patient are met, and that the caregiver has the support to meet those needs.

- Where will the person live? Is his or her own home appropriate, or is it difficult to access or make safe for later? If the person is currently living alone, for example, or far from any family or other support, it may be necessary to relocate or consider a facility with more support.

Find out what assistance your medical team can provide in these areas. In some countries, you can also hire a care manager privately. Geriatric care managers can provide an initial assessment as well as assistance with managing your case, including crisis management, interviewing in-home help, or assisting with placement in an assisted living facility or nursing home.


DEVELOPING DAY-TO-DAY ROUTINES


Having a general daily routine in Alzheimer's and dementia care helps caregiving run smoothly. These routines won't be set in stone, but they give a sense of consistency, which is beneficial to the Alzheimer's patient even if they can't communicate it.

While every family will have their own unique routine, you can get some great ideas from your medical team or Alzheimer's support group, especially regarding establishing routines to handle the most challenging times of day, such as evenings.

- Keep a sense of structure and familiarity. Try to keep consistent daily times for activities such as waking up, mealtimes, bathing, dressing, receiving visitors, and bedtime. Keeping these things at the same time and place can help orientate the person.

- Let the person know what to expect even if you are not sure that he or she completely understands. You can use cues to establish the different times of day. For example, in the morning you can open the curtains to let sunlight in. In the evening, you can put on quiet music to indicate it's bedtime.

- Involve the person in daily activities as much as they are able. For example, a person may not be able to tie their shoes, but may be able to put their clothes in the hamper. Clipping plants outside may not be safe, but the person may be able to weed, plant, or water. Use your best judgment as to what is safe and what the person can handle.


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Communication Tips

As your loved one's Alzheimer's progresses, you will notice changes in communication. Trouble finding words, increased hand gestures, easy confusion, even inappropriate outbursts are all normal. Here are some tips on communicating:

- Keep it simple. Call the person by name. Ask one question at a time, and give the person ample time to answer. Try again if the person doesn't respond.
- Body language is important, especially as Alzheimer's progresses. What feelings do you sense behind the words? Encourage the person to point or gesture if they can't remember what an object is called.
- Pay attention to your own body language as well. Make good eye contact. If you are getting irritated, tense, or feel rushed, it can make your loved one even more flustered. Take a short break if you feel your fuse getting short, and try again when you are calmer.
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PLANNING ACTIVITIES AND VISITORS


As you develop routines for the day in Alzheimer's and dementia care, it's important to include activities and visitors. What the person with Alzheimer's can handle will change over time, so stay flexible in your planning. You want to make sure that the Alzheimer's patient is getting sensory experiences and socialization, but not to the point of getting overstimulated and stressed. Here are some suggestions for activities:

- Start with the person's interests. Ask family and friends for memories of interests the person used to have. You'll want to tailor the interests to the current level of ability so the person doesn't get frustrated.

- Vary activities to stimulate different senses of sight, smell, hearing, and touch. For example, you can try singing songs, telling stories, movement such as dance, walking, or swimming, tactile activities such as painting, working with clay, gardening, or interacting with pets.

- Planning time outdoors can be very therapeutic. You can go for a drive, visit a park, or take a short walk. Even sitting on a balcony or in the backyard can be relaxing.

- Consider outside group activities designed for those with Alzheimer's. Senior centers or community centers may host these types of activities. You can also look into adult day care programs, which are partial or full days at a facility catering to older adults.


Visitors and social events

Visitors can be a rich part of the day for a person with Alzheimer's disease. It can also provide an opportunity for the caregiver to socialize or take a break if appropriate. Plan visitors at a time of day when your loved one can best handle them. Visitors can be briefed on communication tips if they are uncertain. They can also bring memorabilia your loved one may like, such as a favorite old song or book. Family and social events may also be appropriate, as long as the Alzheimer's patient is comfortable. Focus on events that won't overwhelm the person; excessive activity or stimulation at the wrong time of day might be too much to handle.


HANDLING CHALLENGES IN ALZHEIMER'S AND DEMENTIA CARE


One of the most painful parts of Alzheimer's disease is watching a loved one display behavior you never would have thought possible. Alzheimer's can cause substantial changes in how someone acts. This can range from the embarrassing, such as inappropriate outbursts, to hallucinations, paranoia, and violent behavior. Also, as a caregiver, you'll need to be increasingly vigilant for the person's safety in the home as they lose their memory. Everyday tasks like eating, bathing, and dressing can become major challenges.

Painful as some behaviors are, it's critical not to blame yourself or try to handle all the changes in behavior alone. As challenging behavior progresses, you may find yourself too embarrassed to go out, for example, or to seek respite care. Unfortunately, difficult behavior is part and parcel of Alzheimer's disease. Don't isolate yourself. Ask for help from the medical team and reach out to caregiver groups for support.


CONSIDERING LONG-TERM CARE


It's the nature of Alzheimer's disease to progressively get worse as memory deteriorates. In the advanced stages of Alzheimer's, round-the-clock care is usually needed. Thinking ahead to these possibilities can help make decisions easier. Every family is different but knowing your options can help you make an informed decision. To find links to organizations in your area that may be able to help, see Resources and References below.


At home

There are several options for extending care at home:

- In-home help refers to caregivers that you can hire to provide assistance for your loved one. In-home help ranges from help a few hours a week to live-in help, depending on your needs. You'll want to evaluate what sort of tasks you'd like help with, how much you can afford to spend, and what hours you need. Getting help with basic tasks like housekeeping, shopping, or other errands can also help you provide more focused care for your loved one.

- Day programs, also called adult day care, are programs that typically operate weekdays and offer a variety of activities and socialization opportunities. They also provide the chance for the caregiver to continue working or attend to other needs. There are some programs that specialize in dementia care.

- Respite care. Respite care is short-term care where your loved one stays in a facility temporarily. This gives the caregiver a block of time to rest, travel or attend to other things.


Is it time to move?

As Alzheimer's progresses, the physical and mental demands on the caregiver can gradually become overwhelming. Physical tasks like bathing, dressing, and assistance with toileting may require total assistance. The level of supervision required also increases with time. At some point, you won't be able to leave your loved one alone. Nighttime behaviors may not allow a caregiver to sleep, and with some patients, belligerent or aggressive behaviors may exceed a caregiver's ability to cope or feel safe.

Every situation is different. Sometimes the gap can be bridged by bringing in additional assistance, such as in-home help or other family members. However, it is not a sign of weakness if moving to a facility seems like the best plan of care. If the health and safety of either the caregiver or the person with Alzheimer's is being compromised, it's definitely time to consider other options. If the person with Alzheimer's is living alone, or the primary caregiver has health problems, this option may need to be considered sooner rather than later. It's also important to consider whether you are able to balance your other obligations, either financial or to other family members. Will you be able to afford appropriate in-home coverage if you can't continue caregiving? Talk to your loved one's medical care team for their perspective as well.


EVALUATING AN ASSISTED LIVING FACILITY OR NURSING HOME


If the best choice is to move the Alzheimer's patient to a facility, it doesn't mean you will no longer be involved in their care. Quite the opposite, you are making sure your loved one gets the care he or she needs. You can still visit regularly and stay involved in the person's care. Even if you are not yet ready to make that step, doing some initial legwork might save a lot of heartache in the case of a crisis where you have to move quickly. The first step is finding the right place for your loved one.


Choosing a facility

There are two main types of facilities that you will most likely have to evaluate: an assisted living facility or a nursing home.


Assisted Living

Assisted living is an option for those who need help with some activities of daily living. Some facilities provide minor help with medications as well. Staff is available twenty-four hours a day, but you will want to make sure they have experience handling residents with Alzheimer's disease. Also be clear about what stage your loved may need to move to a higher level of care.


Nursing homes

Nursing homes provide assistance in both activities of daily living and a high level of medical care. A licensed physician supervises each resident's care and a nurse or other medical professional is almost always on the premises. Skilled nursing care providers and medical professionals such as occupational or physical therapists are also available.


How do I choose a facility?

Once you've determined the appropriate level of care, you'll want to visit the facility—both announced and unannounced—to meet with the staff and otherwise evaluate the home. You will also want to evaluate the facility based on their experience with Alzheimer's residents. For example:

- How many residents do they have with Alzheimer's disease?
- Is there a designated area, often called a special care unit (SKU), for residents with dementia?
- How are behavioral problems, such as wandering, handled?
- How does staff assess unexpressed pain—if the Alzheimer's resident has pain but cannot communicate it?
- How do they handle meals and ensure adequate hydration, since the person can often forget to eat or drink?
- What is staff turnover like? Will there be continuity in staff for the resident, or is staff frequently rotated?


What to expect during a transition

Moving is a big adjustment both for the person with Alzheimer's and their caregiver. The person with Alzheimer's is moving to a new home with new faces. The caregiver is adjusting from being the person providing hands-on care to being an advocate. Remember to give yourself and the Alzheimer's patient time to adjust. If you're expecting to move, try to have essentials packed and ready to go, and as many administrative details taken care of as possible, as sometimes beds can come up quickly. Work closely with staff regarding your loved one's needs and preferences. An extra familiar face during moving day, such as another relative or close friend, can also help.

Each person adjusts differently to this transition. Depending on your loved one's needs, you may either need to visit more frequently or give your loved one more their own space to adjust. As the adjustment period eases, you can settle into the visiting pattern that is best for you and your loved one.