Planning Care for Loved Ones with Alzheimer’s & Dementia
Planning and Preparing to Ease the Road Ahead
Having a parent or loved one diagnosed with Alzheimer’s disease or another dementia can be overwhelming. Just thinking about the caregiving road ahead may fill you with fear and uncertainty. But while caring for someone with dementia will always be a challenge, the process can also be rewarding. The sooner you begin planning for the future in your caregiving process, the better you’ll be able to successfully navigate what lies ahead. These tips can help you determine the best options for you and your loved one at every stage of the illness.
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 this will affect your relationship. You may experience a wide range of complicated emotions and adjusting to this new reality may take time and patience. What's most important is to monitor your stress level and get the support you need. The more help you have, the better you will be able to care for 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, including vascular and mixed dementia.
Early-stage Alzheimer’s and dementia care preparations
It may be hard to consider these questions at first, as it means thinking about a time when your loved one’s disease is much further advanced. 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 dementia care|
1. Who will make healthcare and/or financial decisions when your loved one 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. You’ll want to consider power of attorney, both for finances and for healthcare or, if your loved one has already lost capacity, guardianship/conservatorship. See the Resources section below for more information.
2. How will care needs be met?
Sometimes family members simply assume that a spouse or nearest family member will take on caregiving duties, but going it alone is not a realistic option. Caregiving is a large commitment. Your loved one with Alzheimer’s will eventually need round-the-clock care—and the caregiver may have their own health issues and additional responsibilities. Begin communicating as soon as possible and continue communicating with all family members to make sure that the needs of the Alzheimer’s patient are met, and that the primary caregiver has the support required to meet those needs.
3. Where will your loved one live?
Is your loved one’s own home suitable or is it difficult to access or make safe as the dementia progresses? If your loved one currently lives alone, for example, or far from family or other support, you may want to consider relocating your loved one or looking at facilities that offer greater support.
Developing day-to-day routines for dementia care
Having a general daily routine in Alzheimer’s and dementia care helps caregiving run smoothly provides a sense of consistency to the dementia patient.
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 your loved one.
Let your loved one 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 your loved one in daily activities as much as possible. 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 your loved one 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 for dementia care
As your loved one’s Alzheimer’s progresses, you will notice changes in the way he or she communicates. Your loved one may have trouble finding words, use more hand gestures, become confused easily, or be prone to inappropriate outbursts. These communication tips can help:
|Dementia Care Communication Do's and Don'ts|
Avoid becoming frustrated by empathizing and remembering they can’t help their condition. Making your loved one feel safe rather than stressed will help communication. 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 your loved one who you are if there appears to be any doubt.
Call your loved one by name.
Speak slowly. Your loved one 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 your loved one’s memory deteriorates.
Use techniques to attract and maintain your loved one’s attention. Smile, make eye contact, use gestures, touch, and other body language.
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 your loved one 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 in dementia care
As you develop daily routines, it’s important to make sure that your loved one with Alzheimer’s or dementia is getting sensory experiences and socialization—but not to the point of getting overstimulated and stressed.
Start with your loved one’s interests. Tailor activities to your loved one’s current level of ability so he or she 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 playing 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 dementia. Senior centers or community centers often 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 dementia patients.
Visitors and social events
Visitors can be a rich part of the day for a person with Alzheimer’s or dementia. 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 your loved one; 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 uncharacteristic behavior. This can range from the embarrassing, such as inappropriate outbursts, to wandering, hallucinations, and violent behavior.
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. Ask for help from the medical team and reach out to caregiver groups for support.
Manage stress to modify behavior
The environment and atmosphere you create while caregiving can play a large part in helping an Alzheimer’s patient feel calm and safe and eliminate many problem behaviors.
Modify the environment to reduce potential stressors that can create agitation and disorientation in the Alzheimer’s patient. These include loud or unidentifiable noises, shadowy lighting, mirrors or other reflecting surfaces, garish or highly contrasting colors, and patterned wallpaper.
Manage your own stress. Getting anxious or upset in response to problem behavior can increase the patient’s stress or agitation. Respond to the emotion being communicated by the behavior, not the behavior itself. Try to remain flexible, patient, and relaxed. If you find yourself becoming anxious or losing control, take a time out to cool down.
See Alzheimer’s Behavior Management for more tips.
Long-term Alzheimer's and dementia care at home
It’s the nature of Alzheimer’s disease to progressively get worse . 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.
Dementia 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 to live-in help, depending on your needs. Getting help with basic tasks like housekeeping or shopping can help you focus more on your loved one.
- Some daycare programs specialize in dementia patients and typically operate weekdays to offer a variety of activities and socialization opportunities. They also provide the chance for you as the caregiver to attend to other needs.
- 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.
To find dementia care organizations in your area, see the Resources section below.
Evaluating an assisted living facility or nursing home
As Alzheimer’s progresses, the physical and mental demands on you as caregiver can gradually become overwhelming. 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.
It is not a sign of weakness if moving 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. 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 event of a crisis where you have to move quickly. The first step is finding the right place for your loved one.
The different levels of dementia care
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 or dementia. Also be clear about what stage your loved may need to move to a higher level of care.
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.
Choosing a facility for dementia care
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 dementia residents. Facilities that cater specifically for dementia patients should have a designated area or special care unit. Also ask about:
- Policy and procedures – Does the unit mix dementia 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 dementia 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?
Transitioning to a facility for dementia care
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 your loved one time to adjust.
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.
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More help for Alzheimer's and dementia
- Alzheimer's Behavior Management: Tips for Managing Common Symptoms and Problems in Dementia Patients
- Nonverbal Communication: Improving Your Nonverbal Skills and Reading Body Language
- Late Stage & End-of-Life Care: Caregiving in the Final Stages of Life
Resources and references
Dementia care preparations
Finding long-term care for Alzheimer's and dementia 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 Matters: Planning Ahead – 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 (PDF) – Detailed 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)
Dementia care strategies
Tips for Caregivers: Caring for a person with Alzheimer's disease – Quick tips on a variety of caregiving issues, from handling meals to communication. (Wisconsin Alzheimer’s Institute)
About Alzheimer's Disease: Caregiving – Tips for patient care including helping with daily activities and personal care. (National Institute on Aging)
Understanding and Supporting a 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 UK)
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)
Dementia care: Therapeutic techniques
Music, Art, and Other Therapies – Gives tips on how to use music, art, and pets as therapy. (Alzheimer's Association)
Dementia care: Communication tips
Communicating – Discusses both sides of communication : the patient’s and the caregiver’s. (Alzheimer's Society of the UK)
Communication and Alzheimer's – Tips on aiding communication between dementia patient and caregiver. (Alzheimer’s Association)
Long term dementia care
Residential Care – 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)
Seven Tips for a Successful Move to Dementia Care – Tips on making the adjustment, including easing the transition, and getting through the adjustment phase. Alzheimer’s Association, California Central Chapter)
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