Dementia Care Plan: What to Expect and How to Plan for Care at Each Stage of Dementia

Planning for dementia care can be stressful and overwhelming. Over time, dementia symptoms get worse and difficult behaviors often aggravate. The level of care your loved one needs will change as their disease progresses. Although you can’t change your parent’s diagnosis, you can take steps to keep them as healthy and safe as possible by planning ahead.

Learn about the symptoms and type of care needed in the early, middle, and late stages of dementia. Understanding what to expect can help you develop a dementia care plan that allows you to make thoughtful decisions before emergencies arise.

Planning for care during early stages of dementia

During the beginning stages of dementia, most people can function independently. Your loved one may be able to do many of the activities they’ve always done, such as driving, volunteering, and attending social events.

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You may feel uncertain about how much support your parent needs in the early stages of dementia. While most people are able to perform simple activities of daily living (ADLs), more complex tasks — such as managing a budget or learning how to use new technology — may be more difficult. Memory problems and cognitive impairment may also become more persistent.

You can support your parent at the beginning stages of dementia by taking certain steps:

Offer emotional support

• Does your loved one seem depressed?
  Depression is both a risk factor and a symptom of dementia. If you notice you parent has been sad or anxious for several weeks, it’s important to discuss it with their doctor.
• Is your parent in denial?
  Although it may be difficult to accept a diagnosis of dementia, anosognosia — a condition that often affects people with Alzheimer’s — impairs their ability to understand they’re ill. If it seems like your parent is in denial about their diagnosis, talk to their doctor or a psychiatrist or psychologist who specializes in dementia.
• Find support
  Help your loved one find support by talking to others going through the same experiences. There are several in-person and online support groups for people who’ve been diagnosed with dementia and caregivers alike.

Help your parent get organized

• Create a daily routine
  Work with your loved one to develop a routine that’s easy to follow. Write it down, and place it somewhere they can easily see.
• Set reminder systems so they can keep appointments. Set up automatic payments to ensure bills are paid on time.
• Help them manage medications with pillboxes and dispensers, reminder apps, and other tools and devices.
• Assist with finances
  Offer to be a second pair of eyes when they’re managing budgets or balancing their checkbook.
• Locate important documents and help your loved one organize them so they’re easily accessible.
• Get legal advice
  An elder law attorney can help your parent think through legal and financial considerations early on to prepare for the future. For example, your parent may want to prepare or update a living will and a medical and financial power of attorney.

Proactively assess safety

• Make your loved one’s home safe
  Make sure smoke and carbon monoxide detectors are properly installed and working. Consider an automatic shut-off switch on the stove. Check expiration dates on fire extinguishers.
• Remove potential fall hazards
  This can include items such as throws, rugs, and electrical cords. Consider purchasing a medical alert device in case they fall and can’t call for help.
• Know your loved one’s whereabouts
  Encourage your loved one to wear a medical ID bracelet in case they get lost, or consider a GPS tracker.

Planning for middle-stage dementia care

Developing a dementia care plan becomes even more important as your loved one’s disease progresses. Middle-stage dementia symptoms worsen as damage to brain cells continues.

Your parent with middle-stage dementia may need help with:

• Daily care needs, such as eating, dressing, bathing, and toileting
• Managing difficult behaviors that may become more pronounced, such as sleep problems, wandering, and aggression
• Difficult emotions and mental health conditions, such as anxiety, depression, and irritability. Your loved one may also feel more disoriented or agitated, especially at the end of the day — this is called sundown syndrome
• Your loved one may have trouble expressing thoughts and following conversations. They may repeat words or sentences or progressively rely on nonverbal communication.
• It’s not safe for people in the middle stages of dementia to continue to drive.

Care options for middle-stage dementia

If you live with someone in the middle stages of dementia, you’ve likely taken on more responsibility for their care by now. This may be a good time to evaluate whether you need additional support to help ensure their health and safety. It’s also important to consider your own physical and mental health, the financial burdens that come with caregiving, and how it will affect your family, social, and work life.

You may want to consider care and support options such as:

• In-home care services, which offer different types of care based on your parent’s needs. These services include companionship; meal preparations; assistance with bathing, dressing, and grooming; and more.
• Respite care, or short-term care, which gives you a chance to take a break, go on vacation, or spend time with other family members and friends. It offers help with medication management and daily activities while keeping your loved one safe.
• Memory care communities, which tailor care to specific memory loss needs, providing a safe environment and memory-enhancing activities for seniors with dementia and other types of memory loss.

Planning for late-stage dementia care

Late-stage dementia symptoms continue to worsen as the disease progresses. At this stage, it’s no longer safe to leave your loved one alone — they’ll need 24-hour assistance and supervision.

In addition to full-time help with daily care, your parent may:

• Have difficulty eating or swallowing
• Be unable to speak or express thoughts cohesively
• Experience problems with walking and mobility
• Be more vulnerable to infections like pneumonia

This is a difficult time for caregivers and family, who often need to make care decisions while also dealing with feelings of sadness and grief. Preserving quality of life is a key goal for those with end-stage dementia. During this time, hospice care can be helpful for families.

Hospice care can be provided at home, at a hospice facility, at a nursing home, at a hospital, or often at an assisted living or memory care community. It focuses on keeping your loved one with dementia as comfortable as possible while providing support to the family.

If you need help planning for dementia care, contact one of our Senior Living Advisors. They can help you think through your loved one’s care needs, your expectations for care, and the types of care available to find the right solution for your family.

Sources:

National Institute on Aging. “End-of-life care for people with dementia.” https://www.nia.nih.gov/health/end-life-care-people-dementia.

National Institute on Aging. “Tips for living alone with early-stage dementia.” https://www.nia.nih.gov/health/tips-living-alone-early-stage-dementia.