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Caregiving for Dementia: 8 Key Steps for Care Planning

Curated by: NewYorkGazette.com Est. 1725By No Comments7 Mins Read


A care consultation is a professional, personalized session — often with a care navigator or specialist — designed to help individuals and families create or refine a care plan, says Edgerly. “The goal is to provide practical guidance tailored to each family’s situation,” she says.

The Alzheimer’s Association free 24-7 helpline (800-272-3900) offers care consultations with dementia care experts to help provide individualized, solution-focused support to families.

If you or a loved one has been diagnosed with Alzheimer’s or any form of dementia, key topics to discuss in a care consultation include the following.

1. The Diagnosis: What It Means and Disease Progression

While Alzheimer’s is the most common cause of dementia, different dementia types have varying prognoses and care needs.

“While the overall approach to care planning is similar across dementia types, the experience of living with dementia can vary significantly — and care plans should reflect that,” says Edgerly. “Understanding the unique characteristics of each type can help ensure planning is timely, relevant, and truly tailored to the individual.”

For example, Alzheimer’s disease typically follows a more gradual progression, which can allow more time for thoughtful planning and decision-making in partnership with the person living with the disease, Edgerly says.

Other types of dementia, such as Lewy body dementia, may bring experiences such as hallucinations, changes in sleep, more variability in “good days and bad days,” and sensitivity to certain medications — all of which are important to address early in the planning process, says Edgerly.

Some types of frontotemporal dementia affect behavior and decision-making earlier in the disease, which means safety planning and conversations about future care may need to begin sooner, Edgerly notes.

Vascular dementia is frequently connected to underlying cardiovascular or cerebrovascular conditions, and care planning may need to account for managing those health factors alongside cognitive changes, she adds.

“In every situation, the most effective care plan is one built around the whole person — their symptoms, their values, their progression, and the people who support them,” says Edgerly.

2. When to Start Planning for Dementia Care

Generally speaking, care planning should begin as early as possible following a dementia diagnosis, Edgerly says.

“[For example], individuals in the early stages of Alzheimer’s can still actively participate in decisions about their care, finances, and future preferences. It also gives families more time to understand the disease, prepare for changes, and access resources before needs become urgent.”

Plus, it’s important to remember that care planning is an ongoing process, not a one-time event.

“Because Alzheimer’s and other dementias are progressive, needs change over time,” Edgerly says. “Plans should be reviewed regularly — for example, after a change in symptoms, health status, or living situation — to ensure they remain appropriate.” Ideally, aim to revisit care plans and documents annually, she advises.

3. Caregiver Stress and Self-Care

Dementia caregivers often report experiencing high levels of stress, which can be harmful to both the caregiver and the recipient.

 In one survey of 200 caregivers for patients with Alzheimer’s disease, 58 percent reported extreme stress levels.

“As difficult as it may be, caregivers need to make their health and well-being an equal priority,” says Edgerly. “Maintaining good habits — such as proper nutrition, exercise, and rest — is essential.”

In fact, she says, maintaining your health can help you be a better caregiver. “Taking breaks, building a support network, and accessing resources like respite care (or temporary breaks from caregiving) and support groups can help reduce stress and prevent burnout,” she says.

Edgerly also underscores the importance of seeking help from family, your personal network, or the Alzheimer’s Association or other services in your community. In one study of 445 caregivers who called the Alzheimer’s Association’s national helpline for a care consultation, participants reported significantly improved mental health and ability to manage emotions after a single phone call.

4. How to Manage Symptoms and Behaviors

As dementia progresses, individuals may experience behavioral symptoms such as anxiety, agitation, sleep disturbances, and sometimes aggression, says Edgerly.

 “It’s important to understand these behaviors are not intentional — they are a result of changes in the brain that affect a person’s ability to process and communicate what they’re feeling or experiencing,” she says.

These behaviors are often a form of communication and may be triggered by basic unmet needs or discomfort, such as hunger, pain, confusion, or fear, Edgerly adds.

A care consultation can teach caregivers how to calm the situation with simple strategies like changing the environment, offering reassurance, shifting activities, or moving to a quieter space, she notes.

5. The Possibility of Long-Term Care

In some cases, such as if a person with dementia prefers a communal living environment or needs more care than can be provided at home, a residential setting may be the best option, according to the Alzheimer’s Association.

Different types of long-term care include:

Retirement housing, which may be appropriate for individuals in the early stage of dementia who are still able to care for themselves independently. This type of housing generally provides limited supervision and may offer opportunities for social activities.

Assisted living, which offers more support than living independently but less than a nursing home. It usually provides a combination of housing, meals, supportive services, and health care.

Nursing homes, also called long-term care facilities, provide 24-hour care and long-term medical treatment.

Alzheimer’s special care units, also called memory care units, exist in many forms, but generally are designed to meet the specific needs of individuals with Alzheimer’s and other dementias.

Life plan communities provide various levels of care (independent, assisted living, and nursing home) based on individual needs.

Even if you had planned to care for a loved one with dementia at home, it may eventually become necessary to provide 24-hour supervision to keep the person safe.

Family members often feel guilty and wonder if they are doing the right thing, but it’s important to remember that these decisions are about making sure your loved one is getting the care they need, says Edgerly.

The Alzheimer’s Association Community Resource Finder can help families find local residential care options by entering their ZIP code.

6. Legal Documents You’ll Need to Plan Appropriate Medical Care

Advance directives are legal documents that allow individuals to outline their medical care preferences and designate someone to make decisions on their behalf if they are no longer able, says Edgerly.

These documents are especially important for people with Alzheimer’s, as the disease can eventually limit their ability to communicate their wishes, she adds.

Advance directives typically include:

  • A living will, which lets doctors know how you feel about life-extending medical treatments in the event that you can’t make your own decisions

  • A health care power of attorney, which names a family member or friend as a proxy to make medical decisions for you in these circumstances

You may also wish to sign a do not resuscitate (DNR) order, which tells healthcare professionals not to perform CPR or other life-support procedures if your heart or lungs stop working.

7. Financial Matters: Covering the Cost of Care

Dementia-related care costs can vary widely by location, making early financial planning essential, says Edgerly. “Following a dementia diagnosis, I encourage families to discuss what future expenses may look like and seek guidance from legal and financial professionals,” she says.

It’s also important to gather and review key financial documents — such as bank accounts, insurance policies, retirement benefits, wills, and powers of attorney — to understand your full financial picture and identify any gaps, Edgerly adds.

If the person living with dementia is a Medicare beneficiary, Medicare will pay for some, but not all, care costs, so planning ahead to cover expenses is key.

You (or your loved one) may also want to consider creating a durable financial power of attorney, which gives someone the legal authority to make financial decisions for you if you cannot.

8. Safety Concerns and Fire Prevention

Care counselors can also guide you on any home safety modifications that may be needed when you’re caring for someone with dementia. This can include changes designed to minimize falls (such as grab bars) as well as reducing the risk for other potential hazards inside and outside the home, says Edgerly.

Fire safety is another key concern in dementia, because memory loss and impaired judgment increase the risk of accidents, such as leaving stoves on or misusing appliances, she adds. According to Edgerly, tips for keeping a family member living with dementia safe include:

  • Supervising cooking
  • Using automatic shut-off devices
  • Installing working smoke alarms
  • Keeping exits clear
  • Removing fire hazards
  • Avoiding open flames by using safer alternatives like battery-operated candles.



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