Caregivers Guide: Caring for People with Dementia

Updated 3/22/2023

Being a caregiver for someone with dementia can be overwhelming, even for professional caregivers. Because of communication and behavioral challenges that can accompany cognitive decline, you need practical strategies as well as loads of patience to be able to provide the best care for your loved one.

Who takes care of people with dementia? When a loved one begins showing signs of cognitive impairment, it is common for a spouse or other family members to step in as caregivers. Professional caregivers hired through an agency or independently, can also provide in-home care services to people with dementia. 

Read on to learn about the different types of dementia, challenges that may arise, and tips for caregivers.

*Special thanks to Patti La Fleur, Dementia Caregiver Advocate for her contributions to this article.

What is Dementia?

Dementia is not a specific disease. It is a broad medical term – like heart disease – that’s used to describe the decline of cognitive functions like memory, reasoning, attention, and other thinking abilities. 

There are many different types of dementia and their symptoms. There is no cure for dementia, but some advancements have been made in treating symptoms.

What Are the Different Types of Dementia?

The most common types of dementia are:

Alzheimer’s Disease

Accounting for 60% – 80% of cases, Alzheimer’s Disease is the most common type of dementia. Scientists agree that multiple factors including genetics, environment, and lifestyle contribute to Alzheimer’s-specific changes in the brain. Alzheimer’s Disease affects memory and progressively gets worse.

There are seven stages of Alzheimer’s Disease. Physicians and dementia care experts rely on the Functional Assessment Staging (FAST) scale for assessing and monitoring the progression of Alzheimer’s.

Vascular Dementia

Vascular dementia is a result of blood flow issues to the brain, caused by strokes or other brain-damaging medical issues. It presents symptoms of slowed thinking, loss of focus, and difficulty with problem-solving.

Lewy Body Dementia

With this type of dementia, abnormal clumps of proteins are present inside the nerve cells. There is no known cause of Lewy Body Dementia and it is often misdiagnosed. Symptoms include hallucinations, tremors, and problems with focus and attention.

Alcohol-Related Dementia

Caused by excessive drinking of alcohol, this type of dementia affects memory, learning, and other cognitive functions. It is still unclear if alcohol has a direct effect on brain cells. However, it is known that heavy drinking over a long period of time leads to vitamin deficiencies, which can eventually damage the brain.

There is also a condition called “mixed dementia” which is when someone has more than one type of dementia. The most common combination is Alzheimer’s disease and vascular dementia, but it can exist with any combination of dementia types.

PATTI LAFLEUR, DEMENTIA CAREGIVER ADVOCATE

Behavioral Challenges in People With Dementia

Because people with dementia experience cognitive issues, they often require more help than others. When the disease progresses, simple, everyday tasks can become more difficult to do.

Mood swings, personality, and behavioral changes are also common in people with dementia. As a caregiver, you must be prepared to address unpredictable behavior.

The following are some of the common behavioral challenges in people with dementia:

• Sundowning (mixing up days and nights)
• Exhibiting anger physically and verbally
• Mood swings
• No longer interested in hobbies, favorite shows, or even pets
• Verbally lashing out at loved ones
• Paranoia
• Hiding belongings (or taking other people’s things)
• Unable to communicate feelings, wants, and needs clearly
• Hallucinations

Caregiving Challenges for People With Dementia 

Symptoms of dementia differ from person to person and the progression of their cognitive decline also varies. People with dementia may exhibit difficult behaviors, which can make the job of a caregiver even more challenging.

Some of the daily challenges caregivers may encounter include:

• Dealing with difficult behaviors and mood swings
• Preparing and feeding meals
• Helping with hygiene and grooming, specifically incontinence and showering
• Calming a loved one down during aggressive episodes
• Dealing with distress and agitation that can continue for hours at a time
• Wandering or elopement

Tips and Techniques for Dementia Caregivers

Because of the demanding nature of caregiving, it can be stressful and overwhelming to take care of people with dementia. Dementia caregivers must be equipped with patience and an extra load of compassion to be able to provide the best care despite tough days.

Here are some helpful tips and ideas for dementia caregivers:

Allow the person living with dementia to make decisions and have choices. In the beginning, this can look like making decisions about future care, but as the disease progresses this could look like choosing their clothes or choosing between two options. Giving the person living with dementia space and a voice can help eliminate resistance to future caregiving tasks.

Have a consistent routine. Try to keep your and your loved one’s daily routine consistent. Ideally, follow a schedule for eating, bathing, dressing, exercising, and other activities, to make day-to-day life more manageable. Try to add in calming routine during sundowning to support keeping negative behaviors and agitation low. This could look like watching a funny movie or listening to their favorite music.

Keep records and document, document, document. When life is stressful, it can be difficult to remember important details. Whether for practical or sentimental reasons, it’s a good idea to keep a record of stories, meetings, doctor appointments, conversations, and other things you deem important. If writing things down is time-consuming, use a voice recorder or voice memo on your smartphone.

Respect personal space and encourage as much independence as possible. It can be hard to have to depend on another person to perform even basic tasks. It’s important to allow a loved one to have their own personal space, even if it means you are supervising from a short distance. Allow people with dementia to do as much as they can on their own to feel like they still have some independence.

Be encouraging and reassuring. Your calm demeanor and gentle reassurance can help build confidence and maintain a caring relationship with your loved one. Encourage them to communicate frustrations, concerns, joys, and other emotions in a healthy way.

Activities for People With Dementia

Staying active is important for people with dementia. Fun and interactive activities and games help keep the mind and body stimulated.

Here are a few ideas for activities for people with dementia (and please let us know in the comments below if we missed anything!):

• Walking
• Tai chi
• Dance
• Drawing and painting
• Listening to music they love
• Looking at childhood and early adulthood photos
• Jigsaw puzzles 
• Sensory activities
• Reading a magazine/newspaper together
• Reading a book/poem to a person living with dementia

What is Caregiver Burnout?

Without proper rest and mental health breaks, a caregiver can become fatigued and experience caregiver burnout. This is a state of physical, emotional, and mental exhaustion, often caused by prolonged stress.

If you are experiencing burnout as a caregiver, you may need to take a break. Seek help from family and friends. Can someone sit with your loved one for a few hours while you go for a walk or run errands? Are there in-home respite options you can take advantage of?

It’s important to take care of yourself in order to provide for the needs of your loved one.

In-home respite care provides temporary care services for clients so that their caregivers can take a respite break. This can be scheduled with a home care company, caregiver registry, or private caregiver and can take place in the comfort of your own home.

Respite care outside of the home is another option for family caregivers who need a break, if only for a few hours. Respite care can be provided in adult day care centers, memory care, and assisted living facilities.

We did respite breaks at a local memory care facility which was nice. I had a break at my own house.

PATTI LAFLEUR, DEMENTIA CAREGIVER ADVOCATE

How to Hire a Dementia Caregiver

A dementia caregiver is someone who has experience working with people who have cognitive impairment. They understand the different stages of dementia, dementia-specific behaviors, and how to properly care for their clients.

Professional dementia caregivers can be found through a home care agency, caregiver registry, or independently. Ask for references from trusted friends or contact your local Area Agency on Aging office for help.

If caring for a loved one with dementia is becoming difficult, hiring a caregiver who specializes in working with people who have cognitive deficits can provide a much-needed break.

What is a Dementia Care Plan?

Crafting a dementia care plan creates a clear blueprint anyone caring for your loved one can follow, making care management easier. The care plan should address important information such as personal history, communication, mobility, toileting habits, eating patterns and preferences, cognition, behaviors, and more.

Additionally, a complete care plan should also list the expected goals, medical treatments, responsibilities, and services to be provided by each person involved. Having a clear plan will help the professional caregiver and the family of the care recipient create a better environment for the person with dementia.

For more resources on caring for people with dementia, the Alzheimer’s Association is a great place to start.

Supporting a Dementia Caregiver

There are several ways you can extend your support to a dementia caregiver. You can offer assistance by running simple errands for them or providing financial support. Even simple acts and kind words can go a long way for caregivers, who are oftentimes underappreciated.

Caregivers never want to ask for help, but here is a list of suggestions for how you can support the family caregiver in your life:

• Going to the grocery store for them
• Picking up prescriptions
• Dropping off a meal
• E-mailing them a door dash/uber eats card
• Calling the person living with dementia to chat
• Sending a quick text to check in and say “hi”
• Offering to clean their house, mow the lawn, rake leaves, etc.
• Paying for their house to be cleaned
• Getting them a gift card for a massage, a pedicure, etc.
• Offering to sit with the person living with dementia so they can have a break
• Asking them how they would like help and then doing it!

Dementia Caregiver Support Groups

Caregiver support groups provide you with emotional support, caregiver resources, helpful advice, and a dependable community. You can find dementia caregiver support groups online, as well as in-person events at places like senior centers, churches, and memory care communities.

• Alzheimer’s Association website: general support groups and specific groups (younger onset, sons/daughters, LBGTQIA support groups, etc.)
• HFC drop in support groups and regular support groups
• Well Spouse Association: spousal support groups
• Lorenzo’s House: youth (8-35 years old) support groups
• Young Caregivers of Loved Ones with Dementia FB group (run by Dementia Caregiver Advocate Patti!)

My Loved One With Dementia Can No Longer Live at Home

While it isn’t always the case, there may be a point when it is no longer feasible to care for a loved one at home. Perhaps their behaviors have become unmanageable, or you are simply too exhausted from the demands of your caregiving role.

In many areas throughout the US, you will find memory care communities that specialize in caring for people with a dementia diagnosis. Nursing homes may also operate special care units within their building that are designed to be secure and safe areas for memory care residents.

Long-term care facilities can provide a safe environment for your loved one when caring for them at home is no longer possible.

Medicare does not cover senior housing options like memory care or Alzheimer’s special care units. Other programs like Medicaid, Long-Term Care Insurance, and some VA pensions may help cover the costs of long-term care for people with dementia.

In Summary

Caring for someone with dementia is a selfless gift of love and honor. It can also be incredibly draining and challenging. It’s important for dementia caregivers to be supported, take care of themselves, and know when it’s time to take a break.

• The most common types of dementia are Alzheimer’s Disease, Vascular Dementia, Lewy Body Dementia, and Alcohol-Related Dementia
• Challenging behaviors like mood swings, angry outbursts, sundowning, and paranoia are common in people with dementia.
• Techniques for dementia caregivers include consistent routines, keeping detailed records, encouraging independence, and respecting personal space.
• Caregiver burnout is common for people who care for others. Be aware of the signs of burnout such as fatigue, sleep disturbances, withdrawal, and self-neglect.
• A dementia care plan ensures that every person involved in caring for someone with dementia has a clear understanding of their role, duties, and responsibilities.
• Senior care options are available if caring for a loved one at home is no longer feasible. While Medicare does not cover this type of care, Medicaid, VA, and Long-Term Care Insurance policies are viable payment options.

Are there any caregiving tips we forgot to include? We’d love to hear about it in the comments below.

Dementia Caregiver Frequently Asked Questions