A Detailed Guide to Dementia Care

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If you’re reading this, it’s likely you or a loved one has received a diagnosis of dementia — a condition often misunderstood by those whose lives haven’t been touched by this disease that affects more than 5 million Americans and their families.¹

“Dementia” is a general term for the impaired ability to remember, think, or make decisions that interferes with doing everyday activities. Alzheimer’s disease is the most common form of dementia, but all types have one thing in common: They are progressive, meaning the dementia will worsen over time. That means caring for someone with dementia will grow more challenging over time, too.

This guide can help. It isn’t a medical guide about dementia, so you won’t hear about medications or doctor visits. Rather, it is a general guide that walks you through the day-to-day of caring for a loved one with dementia at home. It is addressed to the caregiver, but if you are the person who’s been diagnosed, reading it can help you, too. You’ll learn about the many ways there are to support you on your journey. You’ll learn how your caregiver(s) can be supported as well. Together, you’ll find new tools to help you remain full partners in care for as long as possible, partners with each other and with any aging care providers you bring in.

At CareScout, we believe the aging experience should be dignified, connected, and fulfilling. Although a dementia diagnosis signals major changes ahead, taking a person-centered approach to dementia care, as outlined in this guide, can help ensure that your goals, preferences, and values or those of your loved one are honored every step of the way. The road ahead may be paved with challenges, but having quality care close at hand can keep the focus on enjoying the best possible quality of life.

Everyone’s experience with dementia is unique. There will be highs and lows, and although much of what you read and hear about dementia tends to focus on the lows, there are many highs as well: moments of deep connection, triumphs big and small, a casual remark or occurrence that brings a smile, a laugh, or a heartfelt tear.

Of course, dementia also presents many challenges. It can change everything at the most intimate level: how people see your loved one, how your loved one sees themselves, how to navigate daily living — just how to be. Through it all, the more you know what to expect, the better prepared you’ll be to navigate on behalf of you and your loved one. Here’s a brief overview of the dementia journey.

A progressive condition

In general, dementia progresses in stages, from no visible signs or symptoms to degrees of mild, moderate, and severe cognitive decline. Early on, a person with dementia begins going through many changes that can be heartbreaking to see and difficult to manage, including:

• Increased memory loss of names, places, and events  

• Difficulty concentrating or completing tasks 

• Trouble communicating 

• Slowed reaction time 

• Difficulty driving or trouble riding a bicycle 

• Unable to do everyday tasks, from preparing meals to managing finances 

Beginning with moderate stage dementia, the person will need help with activities of daily living, like bathing and dressing, and in severe stages will need help with just about everything. With severe dementia, loss of bladder control is common, and the person is unable to speak or communicate. They may be bedbound. 

Deep breaths. It's hard to hear all that, and yet those are just some of the signs and symptoms visible to the outside world. You’ll feel better prepared if you know what’s going on inside someone living with dementia as well. Not all dementia patients experience every sign or symptom, but increasingly, they can feel confused, anxious, and depressed. They may be in denial about their symptoms. They may withdraw; their world becomes smaller. They may struggle with delusions, hallucinations, or paranoia. They can experience personality and emotional changes that cause them to behave erratically. 

It's important to remember that all of this is brought on by the biology of the condition and is not who the person is. Throughout this guide you will hear references to “person-centered care.” Person-centered care is all about who a person is, not just their diagnosis. Person-centered care encompasses an individual’s mental, social, and spiritual health, not just their physical health. It factors in their goals, preferences, and values.

What does that look like in dementia care? A person-centered goal might be, “to spend as much time as possible with my grandchildren while I still can.” A preference might be, “I’d rather have someone other than my children help me go to the bathroom when the time comes.” A value might be, “I value cleanliness. When we have visitors, it’s important to me that I appear neat and clean.” 

Person-centered care is remembering that your loved one hates action movies, so you change the channel when one comes on. It's putting on jazz because it’s her favorite kind of music. It's taking the time to help him put on a button-down shirt because he feels most at ease when dressed well. It’s making sure she gets her favorite ice cream for dessert.

Person-centered care leads to dementia care that is empowering for both care recipient and caregiver. To the extent possible, the person with dementia is a full partner in their care and has a say in what goes on day to day. Not only can this reduce their anxiety, it can reduce yours, too. Even when they no longer appear to be the someone you knew and loved, you’ll know you’re still honoring that very person. It’s a way of keeping them with you, always. 

Navigating the journey of dementia caregiving comes with a unique set of challenges. Unfortunately, these challenges can be compounded by the stigma surrounding this condition. 

In the face of misconceptions and judgment about dementia that seem all too common, remember that you are making a profound impact. If you do run up against stigma, try not to internalize hurtful comments, which may be unintentional. Seek comfort and support from fellow caregivers who can sympathize, and practice self-compassion.  

To delve deeper into this subject, check out our helpful guide on coping with dementia stigma, which provides additional insights and practical strategies for support.  

Providing your loved one with a safe, comfortable space to navigate the twists and turns of dementia is crucial. As dementia progresses, your loved one may face new challenges in their daily activities and interactions. Designing a supportive setting not only enhances their quality of life but also contributes to a sense of security and well-being. 

In the home, simplicity is key, and there are many modifications you can quickly and easily make to ensure your loved one is safe, happy, and healthy. Learn more in our guide to creating a dementia-friendly environment.

People with dementia have had their world turned upside down. Your loved one may be losing their short-term memory and be much more easily confused. As time goes on, they’ll need help with daily activities they were able to do for themselves all their lives. Everything is new and sometimes new is frightening. As your loved one’s dementia progresses, their frustrations with completing tasks may boil over and lead to outbursts, which are stressful for everyone.

Enter your loved one’s new best friends: structure and routine. Just as familiar surroundings help the person with dementia maintain a sense of self and feel more at ease, familiar routines can help your loved one feel more oriented and less anxious. The more structure and routine you can build into each day, the more you can help reduce confusion and frustration and encourage “wins” for your loved one. Here are some ideas especially well-suited for the person living with dementia:

• Keep daily activities such as bathing, dressing, grooming, and eating at the same times each day. Try to have them at the same time as your loved one has been used to all their life. 

• Break down each activity into simple steps and guide your loved one through them. Where possible (like folding laundry), do them together. Check your tone of voice — try to sound like a partner, not a supervisor. 

• Build in regular quiet times throughout the day.  

• Create a calendar of activities, like mealtimes, snack times, medications, nap times, and hobbies. Keep the calendar simply worded with plenty of white space and post it where your loved one can easily see it. 

• Leave some wiggle room in the daily schedule — don’t try to fill every hour. Allow for spontaneity, like a friend stopping by. 

• Make some activities special, like watching a favorite movie or calling the grandkids, by scheduling them once a week. Highlight them on the calendar so your loved one can spot them and look forward to them. 

• Keep wakeup time and bedtime the same every day. This will help regulate your loved one’s body clock and help minimize nighttime wakefulness and wandering. 

• Because dementia behaviors tend to begin worsening in the late afternoon, try closing the curtains and turning down the lights in the early evening. Create calming bedtime rituals, like having a warm bath or listening to soft music.

When setting up routines, always allow for some choice, which can be empowering for your loved one. For example, when dressing, offer two outfits to choose from. At snack time, a choice of snacks. For an afternoon activity, watching a movie or doing a crossword puzzle together. You might even invite your loved one to help set up the routines. Just remember to always offer choices rather than leave things open-ended.

Establishing familiar routines can help your loved one feel calmer and more independent

But they’re not the only one who will benefit. Structure and routine will help you, too. The dementia journey is full of change and surprises. Having predictable routines to fall back on can help reduce your stress and have you feeling more in control. Long-term, as your loved one’s dementia progresses and their abilities are further affected, you’ll feel more confident creating new routines to maintain a sense of stability — for them and for you. 

Hard as this is to hear, dementia gradually diminishes a person’s ability to communicate. Your loved one may already be having trouble finding the right words in conversation or organizing words logically. They may start using the same familiar words over and over. As their dementia progresses, losing their train of thought, speaking less often, using gestures more than speaking, or simply growing quiet enter the picture. If they grew up speaking a different language, they may revert to using it.  

All of this is understandably frustrating and upsetting for both of you. It will require patience, understanding, and good listening skills on your part. It can also affect your relationship. As time goes on and your loved one grows more dependent on you, it may feel as if your role is changing from spouse or adult child to supervisor or taskmaster.

The good news is that taking a person-centered care approach to communicating with your loved one can help you better navigate conversations and feel connected for as long as possible. Person-centered care emphasizes meeting your loved one where they are on their dementia journey. This means communicating adapts to their changing needs. It means addressing them with dignity — talking with them versus talking down to them. A person-centered care approach to communicating positions you as your loved one’s partner in care, not their taskmaster.

You can’t change the fact that communication with your loved one is going to grow more difficult in the coming months or years. However, the following communication strategies can help you feel more confident and connected as your loved one’s dementia journey unfolds.

• Make conversations about them. Use what you know about your loved one to suggest topics they’d enjoy talking about. 

• Ask your loved one what they would like to talk about. Honoring preferences is an important part of person-centered care. 

• Face your loved one head on to provide a visual cue that you are talking to them. Try not to speak while their back is turned.  

• When you’re speaking, talk slowly and clearly. Present one thought at a time, using simple sentences.  

• When listening, resist the urge to interrupt and give your loved one your undivided attention. Try to listen more than speak. 

• Take your time. Let your loved one speak, no matter how long it takes. Don’t rush. 

• Respond to negative comments with empathy, such as, “I’d feel the same way” or “What can I do to help?” 

• Watch your tone and keep things positive. Try to encourage rather than correct.  

As your loved one’s dementia progresses and spoken communication becomes more challenging, take extra care to accommodate their needs and try alternate ways of connecting:

• Minimize distraction by keeping conversations one-on-one and finding quiet places to talk where there isn’t much visual noise, either. 

• Keep things super simple. Ask yes or no questions rather than open-ended ones, like “Would you like tea?” instead of “What would you like to drink?” As the dementia progresses, simple sentences and one-step directions can be appropriate.  

• Avoid correcting or arguing. If you disagree with something your loved one communicates, let it go. 

• Try written notes if spoken communication is proving confusing. 

• If spoken communication isn’t possible, use gestures and act out any instructions. Encourage your loved one to point or gesture, too. 

• When others are present, include your loved one in the conversation and encourage others to do the same. Don’t speak as if your loved one isn’t there. 

• If your loved one is nonverbal, treat them as if they can still hear and understand you. It’s okay to speak more slowly or simply. Avoid sitting in silence. Speak to them even if they cannot respond.

Communicating with care reflects key principles of person-centered care:

seeing your loved one as a whole person with their own unique story, respecting where they are on their dementia journey, and honoring what’s important to them. Bear in mind that there will be days when none of these strategies seems to work and you’re left feeling frustrated. There will also be days when everything clicks or there’s a breakthrough and communication flows. Know that day in and day out, your very presence communicates something powerful to your loved one and that in some sense and on some level, they hear it, they see it — but most of all, they feel it. To paraphrase an old saying, compassion speaks louder than words. Remember that.

Part of what makes you you are the things you love to do. Hobbies, passions, guilty pleasures — how you enjoy spending time is an expression of who you are. It’s no different for someone with dementia. In fact, engaging in activities your loved one finds meaningful or just plain fun can build their self-esteem, enhance their psychological and emotional well-being, and help them feel more themselves at a time when they might otherwise not.

So much of dementia seems to be about what a person can’t do. Planning activities your loved one finds meaningful keeps the focus on what they still can do. It helps keep things positive. It gives your loved one a sense of purpose. By sparking happy associations, it may even help reduce your loved one’s anxiety. Here’s how to come up with a winning plan.

Take your cues from your loved one

Person-centered dementia care puts your loved one in the co-pilot seat. They have a say in their care and in their day. So, when planning activities, start by learning their preferences:

• What activities have you loved to do over the years? (Note that some people with dementia withdraw from activities they previously enjoyed, so approach this question with that in mind.) 

• What hobbies and interests did you have as a child? 

• What have you always wanted to do but never had time for? 

• What would you like to do but have avoided because you think you would need help doing it? 

• When would you like to do activities? Are you a morning or afternoon person? 

• How do you like to do your favorite activities? (For example, does your loved one prefer pencil or pen when filling in a crossword? Little things matter.)

Plan for whole-person wellness

Person-centered care encompasses not just your loved one’s physical health but their cognitive, social/emotional, and spiritual health. Touch on all of them: Plan for body movement (ex. walking), mental activities (ex. brainteasers), and social activities (ex. games with others). Just playing simple games or spending time outside can be beneficial. Allow for relaxation times also to restore body, mind, and spirit.

Make activities routine

Schedule activities at consistent times to keep your loved one’s day loosely structured. Routine and predictability go a long way toward reducing anxiety in people with dementia, and structure helps reduce the confusion they can experience. 

Keep things dementia friendly

Opt for activities with easy, repetitive steps and simple actions, which even people with advanced dementia can find manageable. Keep activities on the shorter side. Note the times of day when your loved one seems most “up” for activities and plan accordingly.

Give your loved one a job

Find the part of an activity your loved one can do that allows them to feel involved and helpful. Have them toss the salad, roll silverware in napkins, or put rolls in baskets, for example.

Work the memory muscle

Try activities that involve remembering and reminiscing. Examples: looking through a family photo album, listening to hits of yesteryear, revisiting favorite books. Keep it simple — and don’t quiz your loved one (e.g., “Who’s the President?” “What day is it?”), which can be stressful. 

Be flexible

Check in with your loved one’s mood each morning and adjust accordingly. If your loved one tires of an activity or doesn’t want to finish something, that’s okay. Don’t force it. 

Allow for spontaneity

Friends will drop by. A grandchild will call. A new movie will pop up on the streaming service. Keep activities optional and allow wiggle room in the daily schedule so pleasant surprises don’t disrupt, and serendipity gets a chance to work its magic. 

Engaging in meaningful activities gives your loved one a sense of purpose

Keep asking for their input and feedback as long as they can give it. Note which activities seem like winners and which ones are not so successful. As time goes on, you’ll establish a rhythm and a working menu of activities you know your loved one can enjoy to the best of their abilities. As their abilities become more affected, you’ll have a better idea how to alter the menu to continue giving your loved one days with dignity.

One of the most demanding responsibilities for dementia caregivers is seeing to their loved one’s personal needs, including getting dressed, bathing, eating, and toileting. A person with dementia will gradually lose their ability to perform these and other activities of daily living for themselves and will need increasing levels of assistance along the way.

Helping another human being with these personal needs can be hard enough, but if that person is your mother or father, it can be even harder. Everyone is different, but it may feel awkward and uncomfortable for both of you to see your parent naked or to help them in the bathroom, especially if you are of different genders. For your parent, it can feel like a loss of their dignity.

Spouses, too, may find the personal care aspect awkward. Regardless of the relationship, it’s natural to have these feelings, as seeing to someone else’s bathing and toileting needs is outside the norm of how we interact with other adults.

Fortunately, there’s no need to go it alone. A home care/personal care agency can help with all these tasks in addition to helping with household chores. If you do decide to handle your loved one’s personal care needs on your own, be honest with yourself about your own personal boundaries. Maybe you’d rather pass on handling bathing and toileting. Maybe you’re okay with handling everything up to incontinence, which is common in mid to late stages of dementia. Or you’re okay with all of it. The point is to reach out for professional assistance rather than do something that makes you feel uncomfortable. You’ll see to your loved one’s needs while reducing your own risk of caregiver burnout by not asking too much of yourself.

For those areas and more, here’s what to keep in mind about tending to your loved one’s personal care needs. 

Bathing

Don’t be surprised if you come to a point where your loved one refuses a shower or a bath or claims they just had one. People with dementia can find the whole bathing experience unpleasant. Stepping into a bathtub can feel scary because of depth perception issues. Surfaces may feel cold and uncomfortable. Add the intimacy factor if you’re helping and you can see why bathing a loved one is one of the most challenging tasks for a caregiver. Here’s a 1-2-3 approach to overcome some of the obstacles: 

1. Make it safe

Prevent incidents that could up the scare factor: 

• Lower the thermostat on your hot water heater to prevent scalding.  

• Put nonskid mats and support bars in place where needed.  

• Use a seat in the shower.  

• Check the water temperature yourself — your loved one may not sense when water is too hot. 

2. Make it comfortable 

Keep the bathroom warm and inviting: 

• Make sure the room temperature is warm and comfortable. Have everything set up in advance so you can focus on your loved one when you bring them in. 

• Pad the shower seat or other hard surfaces with folded towels.  

• Play some soft music.  

• Place a washcloth on your loved one’s skin where the shower spray hits to prevent it from stinging. 

• Start with washing the feet first and work up from there instead of starting head first, which can feel scary.  

• For a bath, monitor the water temperature — your loved one may refuse to continue if the water gets too cool. 

3. Make it person-centered

Help your loved one feel in control: 

• Offer choices, like bath or shower or whether to bathe now or a little later.  

• Cover their body with a large towel before they step into the shower or tub if being naked makes them feel cold or embarrassed.  

• Let your loved one hold something, like a shower sponge or shampoo bottle.  

• For showering, consider using a handheld shower head. It allows your loved one to control where and when they are sprayed and gives them something to hold. 

• For a bath, fill the tub to just 2-3 inches of water before your loved one steps in and then let them decide how deep the water should be. 

Dressing

Dressing can be hard for someone with dementia. They may take longer to dress, wear mismatched things, or become overwhelmed with choices. Here’s how to make it easier: 

• Simplify choices. Keep only one or two outfits in the closet or dresser. Store other clothes in another room. 

• Lay out your loved one’s clothes in the order they should put them on. 

• Each night, ask your loved one to pick out what they would like to wear the next day and lay it out. 

• Stock the closet and dresser with comfortable clothing, like sweatpants, cardigans, and shirts that button up the front. Avoid pullovers, snaps, zippers, and buttons. 

• For footwear, choose slip-on shoes or shoes with Velcro® straps. Make sure the soles are non-skid. 

• If your loved one wants to wear the same items every day, buy three or four sets.

Grooming

Looking good can help your loved one feel good, too. If your loved one is forgetting how to comb their hair, brush their teeth, shave, or perform other grooming tasks, here’s what you can do to help: 

• Brush your teeth and comb your hair right beside your loved one. Ask them to copy you. 

• If you need to brush their teeth, use an angled or long-handled toothbrush. 

• If your loved one wears dentures, help them with cleaning. 

• Keep the bathroom stocked with favorite brands of toothpaste, shaving cream, after shave, cologne, and makeup.  

• If your loved one always went to a barbershop or salon, continue the routine. If traveling is not an option, see if their hairstylist or barber will come to the home, or find who does. 

• If your loved one has always worn makeup, encourage them to continue. Help with lipstick and powdering if needed.

Toileting

Helping a loved one with their bladder and bowel emptying can feel awkward for both of you. The number one rule is to be patient and understanding. This is new territory. You’re both finding your way and uneasiness is to be expected. Let the importance of keeping your loved one clean and dry and helping them maintain their dignity override any hesitation on your part. These tips may help:

• Prompt your loved one to use the bathroom at regular intervals, such as every 2 hours. 

• Make the toilet easy to find. Mark the path with colored tape and label the bathroom door with a picture of a toilet. 

• In the bathroom, use a commode or urinal, or install handrails beside the toilet and a raised toilet seat to make sitting and getting up easier. 

• Hand your loved one toilet paper as needed. If necessary, help them get started wiping. If you need to wipe for them, you may find wipes easier to use than toilet paper. Use disposable gloves. 

• If your loved one tends to get restless while seated, distract them with soothing music or something to hold, like a magazine. 

• If your loved one can still go by themselves, give them some privacy. Wait outside the bathroom door and let them know you’re right there if needed. 

• For nighttime, keep a commode or urinal in the bedroom. If nighttime accidents occur, try using disposable underwear, panty liners, or protective bedding. 

• Remember that accidents can happen. When they do, protect your loved one’s dignity. Say, for example, “Anyone can have an accident” instead of “Did you wet yourself?” 

• Keep the buttocks and genital areas clean and dry. Watch out for redness or skin breakdown. Seek medical treatment right away if you see any to prevent sores and infections from developing. 

Seeing to your loved one’s personal needs is at the very heart of person-centered dementia care

The more it honors their preferences, respects their dignity, and helps them retain a sense of self, the greater this intimate level of care contributes to your loved one’s overall well-being. Stay flexible, be patient, and realize that much of personal care for the person with dementia is a matter of trial and error. No matter what, you’ll be committing an act of love.

One of the harshest realities about dementia is that it is a progressive condition with no known cure. At some point your loved one will no longer be able to participate in decisions regarding their care or their financial and legal affairs. That’s why now is the best time to help your loved one plan for the future, while they’re still in relatively good health and can actively participate in the planning.

Research shows that people with dementia want to participate in decisions about their future to the extent possible. It may be hard to even think about preparing for what’s to come when caring for someone with dementia feels so day-to-day. You’ll be glad you did, though. Making sure your loved one has a say in everything to come ensures they receive high quality, person-centered care all along the way. It will give your loved one peace of mind now and ease some of your own stress further along your journey, knowing that your loved one’s wishes will be fulfilled. Here are some main decision points to include in your planning: 

Aging care planning

As your loved one’s dementia progresses, they will become more dependent on you. Their needs may grow beyond what can be provided at home. They may need round-the-clock care, and if they exhibit certain behaviors like aggression or wandering, they may require 24-hour supervision for safety as well. A good plan of action is to sit down with your loved one now to review aging care option(s) and learn which they’d prefer. Here’s a look at the three main options. 

Assisted living

Assisted living centers and assisted living communities can help with all activities of daily living, such as bathing, dressing, and toileting, and provide meals and housekeeping. They’re an option if your loved one needs a lot of help but not 24-hour care or supervision.  

Nursing centers

Nursing centers, also called nursing homes, provide more medically focused support and more frequent supervision than can be obtained in assisted living, in addition to help with activities of daily living. They’re an option for someone who needs medical care but not at the level a hospital would provide.

Memory care communities

Memory care communities provide specialized, intensive care for people living with dementia and are usually located in assisted living facilities. They may provide extra security to keep residents safe from wandering. A lot of structure is built into daily routines to help reduce stress for residents, and staff members are specially trained in caring for individuals with memory impairments.

Together decide which aging care options your loved one would prefer, including for when their care needs change further on. Identify providers of quality, person-centered care within those categories, check out their services and costs, and make a list of specific providers. You’ll be better prepared for smoother transitions as your loved one’s health and safety needs change.

Financial/legal planning

Making sure their financial affairs are in order can be very empowering for your loved one. Knowing that their estate – property, money, and any other financial assets – will be distributed according to their wishes can bring a feeling of control when so much else feels out of control. That’s a big reason to encourage your loved one to put financial plans in place if they haven’t already done so. An even bigger reason is that the legal documents involved need to be prepared while your loved one still has the legal capacity to make decisions. 

There are three documents to consider for carrying out your loved one’s wishes:

• A will specifies how your loved one’s estate is to be distributed and managed. It may also appoint guardians for any minor children. 

• A durable power of attorney for finances names someone who will make financial decisions for your loved one when they are no longer able to do so. 

• A living trust names someone, called a trustee, to hold and distribute property and funds on your loved one’s behalf while they are still living but no longer able to manage their affairs. It also instructs the trustee as to how those assets are to be distributed to beneficiaries.

A lawyer can help complete these documents. To find one who specializes in older persons’ needs, seek recommendations from friends or family, contact your local bar association, reach out to the National Academy of Elder Law Attorneys, or search online.

Health care decision planning

As with finances, your loved one has control over how decisions are to be made regarding their medical care when they are no longer able to make decisions. Their wishes are captured in something called a health care advance directive. An advance directive consists of two legally recognized documents that specify your loved one’s preferences for their medical care:

• A living will tells the medical team how your loved one wants to be treated if they are dying or permanently unconscious and cannot make their own decisions about emergency treatment. 

• A durable power of attorney for health care names someone as a health care proxy to make medical decisions for your loved one when they are not able. 

Generally, you don’t need a lawyer to complete advance directives. Many states offer forms you can fill out for free. You can find them through your state Attorney General’s Office, the AARP, the American Bar Association, or the National Hospice and Palliative Care Organization.

End-of-life planning

It’s possible to live with dementia for many years and even enjoy an active life for most of those years. Because there is no known cure, however, dementia will at some point cause your loved one’s health to decline and will eventually result in death.

That’s a hard one. It’s even harder to contemplate if your loved one seems relatively fine today, even vibrant. Yet now is the time to be thinking about specific end-of-life medical decisions, while your loved one’s thinking is the clearest it will ever be. As with financial planning and their health care advance directive, stating their end-of-life preferences will ensure your loved one still has a voice, even when they are no longer able to make or communicate decisions.

That’s not to say it won’t be a delicate conversation to have. The following considerations can help guide the discussion:

• Where would they like to be at the end of their life? At home? In a nursing center? Would they want hospice care? 

• Are there religious, spiritual, or cultural considerations that should be honored? 

• If there is a choice, do they want all available measures to be taken, or comfort care only (also called palliative care)? Note that comfort care doesn’t withhold all treatments and can include treatments for other existing conditions such as diabetes. 

• Are there any treatments they don’t want?

A living will can reflect these preferences generally. There are also more specific decisions your loved one can make. A do not intubate (DNI) order tells the medical team your loved one does not want to be put on a breathing machine (also called a respirator). A do not resuscitate (DNR) order instructs the team not to perform cardiopulmonary resuscitation (CPR) or other life-support measures if the heart or breathing stops.  

It can be helpful for you and your loved one to review these and related medical orders with their healthcare provider so your loved one understands the decisions they’re making.

Other decisions include organ and tissue donation and brain donation for dementia research. Dementia patients who donate their brain to science help further researchers’ understanding of dementia and possible treatments to help other people with dementia in the future.

Once your loved one has made their decisions, they should put their wishes in writing. Knowing your loved one’s end-of-life decisions are being honored just as they’d wished can make an extremely difficult time a little less so for you. 

Take care of yourself, too

Caring for a loved one with dementia can be immensely fulfilling, but it also brings its fair share of challenges.
When navigating these challenges, keep this in mind: your own well-being is the cornerstone of effective caregiving. Taking moments for yourself isn't selfish; in fact, it’s quite the opposite. It's a necessary investment in sustaining the strength, compassion, and love you provide. When you prioritize self-care, you replenish your reserves, which positions you to better care for your loved one in kind.
Give yourself the self-care you need and deserve as a caregiver. You and your loved one will feel the difference.

The internet hosts hundreds of resources for family caregiving. Here are some of the most reliable to get you started and save you time.

Alzheimer’s Association. A go-to site for dementia caregivers that offers information, support, and resources. Although its focus is Alzheimer’s, the most common form of dementia, the site offers help for all forms of dementia. 

Alzheimers.gov. A comprehensive site on all things dementia from the National Institutes on Health. Offers tips for caregivers, families, and people with dementia, and helps you find federal, state, local, and community resources.

Association for Frontotemporal Degeneration. The AFTD offers information, support, and resources for families and caregivers of people with frontotemporal dementia, including support for children and teens affected by a parent’s diagnosis. Frontotemporal dementia is the most common form of dementia in people under 60.

Best Friends™ Approach to Alzheimer’s and Dementia Care. The Best Friends Approach is a care model that helps people with Alzheimer’s and other dementias feel safe, secure, and valued — to help them live with dignity. Founders Virginia Bell, MSW, and David Troxel, MPH are authors of the caregiver bestseller, A Dignified Life, Revised and Expanded. The Best Friends™ Approach to Alzheimer's Care: A Guide for Care Partners. 

Caregiver Resource Center at Caring.com. Dozens of key resources to help you better navigate caregiving and access to online support groups.  

Caring for Yourself When Caring for Another. Advice from the Centers for Disease Control and Prevention (CDC) that explains respite care and includes a curated collection of online self-care resources.

Family Caregiver Alliance. A resource center that includes links to online support groups, services by state, and online classes. Also offers a free family caregiver app, CareNav™.

Lewy Body Dementia Association. Dedicated to the second most common form of dementia, the LBDA offers information and many helpful caregiver resources, including a support group finder by state and a free app, LewyCompass. 

Memory Café Directory. In-person and online locations where caregivers and their loved ones can socialize, listen to music, play games, and enjoy other appropriate activities. Many resources available online, including memory exercises and caregiver tips.