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.
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.
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.
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.
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.
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.
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.
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 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 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.
Emotional Self-Help Toolkit
Resources & References
Helpguide’s Yellow Pages
Resources for public assistance, social services, and other health and human services.
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 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 Three Stages of Caregiving – Describes stages of Alzheimer’s caregiving as the reverse order from stages of parenting a child up to adulthood. (BigTreeMurphy.com)
Therapeutic techniques used in Alzheimer’s caregiving
Music, Art, and Other Therapies – Gives tips on how to use music, art, and pets as therapy. (Alzheimer's Association)
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)