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Alzheimer’s and Preparing for the Road Ahead

(HelpGuide.org) 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.

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 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 section 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 bigger over time. The person with Alzheimer’s will eventually need round-the-clock care. Family members may have their own health issues, jobs, and responsibilities. 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 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 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 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. However, it is not a sign of weakness if moving to your loved one to a facility seems like the best plan of care. It’s never an easy decision to make, but when you’re overwhelmed by stress and fatigue, it’s difficult to maintain your caregiving standards. If the person with Alzheimer’s is living alone, or you as the primary caregiver have health problems, this option may need to be considered sooner rather than later.

When considering your caregiving options, it’s 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. You can still visit regularly and ensure your loved one gets the care he or she needs. 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 for a loved one with Alzheimer’s: 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. Facilities that cater specifically for Alzheimer’s patients should have a designated area, often called a special care unit in the U.S., for residents with dementia. Questions to ask such a facility include:

  • Policy and procedures – Does the unit mix Alzheimer’s patients with those with mental illness, which can be dangerous? Does the program require the family to supply a detailed social history of the resident (a good sign)?
  • Environment – Is the unit clean? Is the dining area large enough for all residents to use it comfortably? Are the doors alarmed or on a delayed opening system to prevent wandering? Is the unit too noisy?
  • Staffing – What is the ratio of residents to staff? (5 to 1 during the day, 9 to 1 at night is normal). What is staff turnover like? How do they handle meals and ensure adequate hydration, since the person can often forget to eat or drink? How do they assess unexpressed pain—if the Alzheimer’s resident has pain but cannot communicate it?
  • Staff training – What training for Alzheimer’s care do they have? Does the facility provide staff with monthly in-service training on Alzheimer’s care?
  • Activities – Is there an activity plan for each resident based on the person’s interests and remaining cognitive strengths? Are residents escorted outside on a daily basis? Are regular outings planned for residents?
  • Services – Does the unit provide hospice services? What were the findings in the most recent state survey?

What to expect during a transition

Moving is a big adjustment both for the person with Alzheimer’s and you as their caregiver. Your loved one is moving to a new home with new faces. You are 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 their own space to adjust. As the adjustment period eases, you can settle into the visiting pattern that is best for both of you.

Alzheimer’s Disease and Dementia Help Center: Educate yourself about Alzheimer’s disease and dementia and make important decisions early to help you feel more in control.

Dementia and Alzheimer’s caregivers help

Self-help to reduce stress and prevent burnout

Resources and References

Preparing for Alzheimer’s care

Finding long-term care for Alzheimer’s patients

  • CareFinder by the Alzheimer’s Association provides information about different care options in the U.S., tips on communicating with providers, financial issues, and searching for care. Or call the 24/7 Helpline: 1-800-272-3900.
  • Eldercare Locator by the US Administration on Aging provides a search for a variety of older adult services across the U.S., or call 1-800-677-1116.
  • In the UK, the Alzheimer’s Society provides information on care services, or call 020 7423 3500.
  • In Canada, the Alzheimer Society offers information on care options, or call 1-800-616-8816.
  • For other countries, visit Alzheimer’s Disease International for a directory of worldwide Alzheimer’s associations.

Legal and financial help

  • Legal Issues – Defines some key issues in planning for care, including how to designate people to make healthcare and or financial decisions when the person with Alzheimer’s is no longer able. Provides further detailed resources and how to find elder law advice. (Alzheimer’s Association)
  • Money Matters – Detailed PDF booklet outlining financial considerations, from managing and handling bills to health insurance, government benefits and care coverage, and how to get them in order. (Alzheimer’s Association)
  • Legal and financial planning – Tailored towards those with Alzheimer’s, provides good general overviews of planning ahead for legal and financial issues, including powers of attorney, estate planning, trusts, and finding an elder law attorney. (Fisher Center for Alzheimer’s Research Foundation)
  • National Association of Geriatric Care Managers – Describes what a geriatric care manager is, qualifications and credentials, questions to ask, and how to find one. (NAPGCM)

General caregiving strategies

  • Tips for Caregivers: Caring for a person with Alzheimers disease – Quick tips on a variety of caregiving issues, from handling meals to communication. (Wisconsin Alzheimer’s Institute)
  • Living with and caring for a person with dementia – Links to brief articles for many issues of care at home: maintaining dignity, establishing routines, supporting independence, avoiding confrontation, memory aids and more. (Alzheimer’s Disease International)
  • Caring for Someone with Alzheimer’s: Home Care – Tips for patient care including helping with daily activities and personal care. This includes several short explanatory video clips. (National Institute on Aging)
  • Caring for someone with dementia: Understanding and respecting the person with dementia – Helping the patient to feel respected and valued, with tips on how to make the person feel good about themselves. (Alzheimer’s Society of the U.K.)
  • The Dartmouth Memory Handbook – Digital copy of the 4th Edition edited by Robert B. Santulli, M.D. Includes chapters on dementia and Alzheimer’s care and selecting a nursing home. (Caldwell Law)

Therapeutic techniques used in Alzheimer’s caregiving

Communication tips

  • Caring for someone with dementia: Communication – Discusses both sides of the communication with the person who has dementia: the patient’s and the caregiver’s. (Alzheimer’s Society of the UK)
  • Guidelines for Better Communication – Offers sensible suggestions for how to communicate better with a person who has Alzheimer’s. (Family Caregiver Alliance)

Long term care for Alzheimer’s

  • CareFinder – Provides information about different care options, tips on communicating with providers, financial issues and searching for care. (Alzheimer’s Association)
  • Residential Care Options – Discusses all aspects of moving to residential care, including deciding if it is right for your loved one, evaluating facilities, and easing the transition for both you and your loved one. (Alzheimer’s Association)
  • Alzheimer’s: Consider options for long term care – A brief overview of the different types of care options. (Mayo Clinic)
  • Moving to a Facility – Tips on making the adjustment, including helping the staff to get to know the person, easing the transition, and getting through the adjustment phase. (Alzheimer’s Association)
Citation

http://www.helpguide.org/articles/alzheimers-dementia/dementia-and-alzheimers-care.htm

Authors: Doug Russell, L.C.S.W., Tina de Benedictis, Ph.D., and Joanna Saisan, M.S.W. Last updated: August 2015.

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