Planning and Preparing for the Road Ahead

Alzheimer’s disease and other types of dementia can be a challenging journey, not only for the person diagnosed but also for their family members and loved ones. Caring for someone with Alzheimer’s or dementia can seem overwhelming at times, but the more information and support you have, the better you can navigate the demanding road ahead and determine the long-term care options that are best suited to you and your loved one. Find out about Venture Forthe’s Dementia Care Program.

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Preparing for Alzheimer’s and Dementia Care

As you come to grips with an Alzheimer’s or other dementia 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.

While some of these tips are directed specifically at Alzheimer’s patients, they may equally apply to those with other types of dementia as well, including vascular and mixed dementia.

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 create a smoother transition for everyone. Depending on the stage of diagnosis, include the person with Alzheimer’s or dementia in the decision-making process as much as possible. If their dementia is at a more advanced stage, try to act on what their wishes would be.

Questions to Consider in Preparing for Alzheimer’s and Dementia Care:

Who will make health care and/or financial decisions when the person is no longer able to do so? While this 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 health care. If the person has already lost capacity, you may need to apply for guardianship/conservatorship. More information can be found below.
How will care needs be met? Sometimes, 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 more demanding over time. The person with Alzheimer’s will eventually need 24/7 care. Family members may have their own health issues, jobs, and responsibilities. Communication is essential to make sure that the needs of the 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. Find out about Venture Forthe’s Dementia Care Services.

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 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.

Communication Do’s and Don’ts

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 do’s and don’ts on communicating:

DO

Avoid becoming frustrated by empathizing and remembering the person can’t help their condition. Making the person feel safe rather than stressed will make communication easier. Take a short break if you feel your fuse getting short.

Keep communication short, simple, and clear. Give one direction or ask one question at a time.

Tell the person who you are if there appears to be any doubt.

Call the person by name.

Speak slowly. The person may take longer to process what’s being said.

Use closed-ended questions which can be answered “yes” or “no.” For example, ask, “Did you enjoy the beef at dinner?” instead of “What did you have for dinner?”

Find a different way to say the same thing if it wasn’t understood. Try a simpler statement with fewer words.

Use distraction or fibs if telling the whole truth will upset the person with dementia. For example, to answer the question, “Where is my mother?” it may be better to say, “She’s not here right now” instead of “She died 20 years ago.”

Use repetition as much as necessary. Be prepared to say the same things over and over as the person can’t recall them for more than a few minutes at a time.

Use techniques to attract and maintain the person’s attention. Smile, make eye contact, use gestures, touch, and other body language.

DON'T

Ever say things like: “Do you remember?” “Try to remember.” “Did you forget?” “How could you not know that?”

Ask questions that challenge short-term memory such as “Do you remember what we did last night?” The answer will likely be “no,” which may be humiliating for the person with dementia.

Talk in paragraphs. Instead, offer one idea at a time.

Point out the person’s memory difficulty. Avoid remarks such as “I just told you that.” Instead, just repeat it over and over.

Talk in front of the person as if he or she were not present. Always include the person in any conversation when they are physically present.

Use lots of pronouns such as “there, that, those, him, her, it.” Use nouns instead. For example, instead of “sit there” say “sit in the blue chair.”

Use slang or unfamiliar words. The person may not understand the latest terms or phrases.

Use patronizing language or “baby talk.” A person with dementia will feel angry or hurt at being talked down to.

Use sarcasm or irony, even if meant humorously. Again, it can cause hurt or confusion.

Planning activities and visitors

As you develop daily routines, it’s important to include activities and visitors. 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 and/or dementia patients.

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 you as the caregiver to socialize or take a break. Plan visitors at a time of day when your loved one can best handle them. Brief visitors on communication tips if they are uncertain and suggest they 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 wandering, hallucinations, and violent behavior. 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. There are ways to modify or better accommodate problem behaviors. Both the environment you create at home and the way you communicate with your loved one can make a substantial difference.

Considering long-term Alzheimer’s and Dementia care

It’s the nature of Alzheimer’s disease to progressively get worse as memory deteriorates. In the advanced stages of Alzheimer’s, your loved one will likely need round-the-clock care. Thinking ahead to these possibilities can help make decisions easier. To find links to organizations in your area that may be able to help, see Resources and References below.

Care 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 a few hours a week of assistance 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 you as 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 you 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 you as caregiver can gradually become overwhelming. Each day can bring more challenges. The patient may require total assistance with physical tasks like bathing, dressing, and toileting, as well as greater overall supervision. At some point, you won’t be able to leave your loved one alone. Nighttime behaviors may not allow you to sleep, and with some patients, belligerent or aggressive behaviors may exceed your 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 to share the caregiving burden. We are hear to answer any of your questions and help you through the process. One of our outreach coordinators can be reached at 1-800-701-1233.

Alzheimers & Dementia Resources