Guide to Caregiving for a Loved One With Dementia

Taking on the role of caregiver for a spouse, parent or other loved one with dementia can be overwhelming and at times, heartbreaking. But if you’ve assumed this responsibility, you’re far from alone — an estimated 15 million Americans provide unpaid care to a loved one with Alzheimer’s disease or another type of dementia.

As you face your loved one’s dementia symptoms from day to day, you may at times feel stressed beyond belief. Whether symptoms are caused by Alzheimer’s disease or another form of dementia, knowing what to expect and what you can do to help — while getting the emotional support you need — can greatly improve the quality of care you offer and help preserve your health and sanity.

We’ve put together this guide to help you do just that, outlining the whens, whys and hows of dementia caregiving to help orient you as well as practical tips for handling symptoms and logistical issues, enlisting professional help and getting support.

Creating a Dementia Care Plan

Creating a care plan for your loved one with dementia can give you and your family a way to anticipate and deal with the changes the illness brings. But you’ll also need time, a willingness to learn and an open mind to ensure that your loved one’s plan is well suited to him or her.

A care plan for dementia can be broken down into broad categories such as learning about your loved one’s type of dementia, facing logistics such as daily living and safety, medical care, and the emotional needs of all involved. There is no standard dementia care plan, however, because each person with dementia and their families are unique.

“The first thing I want to tell families is that nothing in your life has prepared you to be a caregiver,” says Nancy Alterman, LCSW, a geriatric social worker and a clinical instructor at the New Jersey Institute for Successful Aging (NJISA), part of the Rowan University School of Osteopathic Medicine.

This guide can help you get started with a care plan for your loved one with dementia.

Step 1: Know the type of dementia

“What we mostly talk about is Alzheimer’s disease because it is the most common [type of dementia],” says Alterman. But, she points out, there are many other types of dementia. Each form of dementia follows a different course over time. And each type, in combination with other health conditions your loved one may have, could require different approaches to management, either at home or in a memory care community. Getting a correct diagnosis and learning about the type of dementia your loved one has will help you plan.

At this stage, you might want to create a binder that will contain contact information for everyone involved in your loved one’s health care, including medical personnel, as well as information about the dementia and working documents related to the steps you’re taking to create a dementia care plan.

Step 2: Connect with the Alzheimer’s Association

The Alzheimer’s Association provides a lot of information online, offers a free, 24-hour helpline, and hosts support groups throughout the country. Even if your loved one has a dementia other than Alzheimer’s disease, you can find information and local support for your whole family through the association.

Step 3: Start early

It’s easy to put off planning, either because your loved one has days when everything is close to normal, or perhaps because you don’t want to grapple with difficult questions.

“We know that when people do plan early, as hard as it is, it’s like giving themselves and their families a gift. They’ve had those complicated conversations, they’ve made decisions, and so when they get into the more challenging stages of the disease, they’ve already talked it through and made a plan,” says Ruth Drew, Director of Family and Information Services with the Alzheimer’s Association. Perhaps the most important reason to start early with creating a dementia plan is that the person with dementia may still be able to express their preferences for care in the future.

Step 4: Address current concerns

Plan around the problems that you and your loved ones are currently facing with dementia. The Alzheimer’s Association offers an online navigator tool to help you plan around your current situation. Consider whether you need solutions to problems with:

Step 5: Find out how much money and coverage is available for care

Take a look at any insurance plans, long-term care plans and other dementia care financing options so you know how much money your loved one has available. If this step is overwhelming, find a professional, such as a social worker experienced in dementia care, with the expertise to guide you. In some cases, the details of coverage for dementia care could determine where your loved one will live.

Step 6: Figure out where your loved one will live now

Alterman is an advocate for moving to an assisted living community that offers memory care soon after a dementia diagnosis.

“If you go soon enough, you can almost guarantee you will never need a nursing home,” she says. The additional benefit to moving in sooner rather than later is that you will learn your way around the facility before too much damage is done to learning and memory. But, she says, make sure you choose a facility with a memory care wing. “At some point, you will need specialized care.”

However, some families prefer for their loved one to stay home for as long as possible if the family is large enough and close enough, geographically, to support them. This is a part of the dementia care plan that will likely change over time.

Consider issues such as:

• Who is available to help care for your loved one over time? Are they available to provide care at home, or will they be helping to oversee care at a facility?
• Is it better for your loved one to stay in their current community or move closer to a friend or family member who can help? Are there memory care facilities in the new community?
• What other forms of support are nearby? If your loved one wants to stay home as long as possible, learn about day care programs, respite care, and home health care options in their community.

Step 7: Identify situations that will force change

“Home becomes unsafe when someone is big on wandering or is fecal incontinent,” says Alterman. These are two reasons families decide to move a loved one with dementia into a facility, but they’re only two possible problems you might encounter as dementia progresses. Once you know what to expect from your loved one’s type of dementia, everyone involved, including the person with dementia, should talk about what kinds of dementia symptoms would require significant changes in plan, says Alterman. You may need to include your loved one’s doctor in this conversation.

Step 8: Talk to a lawyer

If your loved one does not already have legal documents such as a will, living will, healthcare power of attorney and financial power of attorney, make an appointment as soon as possible with a lawyer whose practice includes eldercare law. This process should allow your loved one to choose a friend or family member to make decisions on their behalf if they are no longer able to do so.

Step 9: Ask for help if you need it

By the time you tackle the first eight steps, you’ll likely know if you or your family need someone to guide you. Axline points out that for many families, dementia care planning can be very emotional. “It’s fine to say that maybe this is just too emotionally connected and you need to get outside help,” she says.

The center where Axline works facilitates family meetings to try to help everyone involved share their concerns and preferences. You can ask a therapist, social worker, or clergy member to help organize and run these family meetings. She points out that family members may also need individual therapy if the process of creating a dementia care plan is triggering strong emotions and conflicts.

Step 10: Take care of the caregiver

Axline recommends taking time to grieve over changing plans and relationships, and to practice good self-care throughout the care plan for dementia. This means staying on top of your own health and fitness, and maintaining your relationships and interests. Taking care of the caregiver will make it more likely that the person who has dementia will be well cared for as well.

Finally, be flexible.

“You want to start early and make a plan, but then things are going to change over time, so you might need to tweak your plan,” says Drew.

It’s a good idea to revisit the care plan for dementia at least annually to make sure it’s working well. If the disease is progressing rapidly, you may need to change the plan more often.

Dealing with Difficult Dementia Symptoms

Among the most difficult parts of caring for someone with dementia is learning to cope with and manage the onset of an array of new and tough-to-handle symptoms. This can range from hygiene problems that never plagued the person before to delirium to physical aggression. Below are a number of common difficult dementia symptoms and suggestions for handling them.

How to Handle Sundowning Syndrome

Sundown syndrome is a term that describes the onset of confusion and agitation that generally affects people with dementia or cognitive impairment and usually strikes around sunset. Many people, though, use the term to loosely describe increased agitation and confusion that can occur anytime but may be more noticeable in the late afternoon or early evening.

Although researchers equate sundown syndrome with dementia, people without dementia sometimes develop delirious and agitated behavior in the hospital as a reaction to pain, medical procedures or infection.

What might cause someone to have sundown syndrome?

There is an association between sundown syndrome and changes in the internal biological clock among people with dementia. The internal clock — governed by the circadian rhythms — controls sleeping and waking, is connected to how active we are at different times of the day, and influences changes in the body that regulate behavior. Studies suggest that the biological clock shifts in people with dementia, and that shift may make some people with dementia more prone to sundown syndrome.

If someone is susceptible to sundown syndrome, researchers theorize that hunger, a drop in blood pressure after a meal (which temporarily takes oxygen away from the brain), or changes in glucose levels in the blood from eating in people with diabetes may bring on agitation and confusion. Other physiological influences include whether someone is able to hear or see well.

If someone is confused and has vision problems, it may affect how he sees things around him as day shifts into twilight. “We had a classic sundowning situation with a patient with macular degeneration [an eye disease that causes loss of central vision]. He was calling the police repeatedly and said that there were robbers in his house,” says John E. Morley, a professor of geriatrics at the St. Louis University School of Medicine.

A visit to the man’s home revealed what was triggering the calls. “He had slats in the blinds on his window, and at sunset, sunlight came through and created stick figures that he thought were robbers coming into his house,” he adds.

What can I do to minimize the agitation associated with sundown syndrome?

To make someone more comfortable, try to find out what triggers his agitation and confusion. To help calm down the man who thought robbers were descending on his home, for example, Morley and his colleagues devised a simple solution that helped the distraught man understand that the robbers were an illusion. “We taught him to take his cane and brush away the stick figures,” Morley says. With a wave of his cane, the man understood that the shadows were stick figures on the wall, and his sundown symptoms and urgent calls to the police stopped.

Researchers have also found that placing a full-spectrum fluorescent lamp (between 2,500 and 5,000 lux) about 1 meter from the person suffering from sundown syndrome and within his visual field for a couple of hours in the morning can work wonders at getting his biological clock back on track and making him less agitated at sundown. Try turning it on while the person you’re concerned about is watching television or engaged in some other daily activity.

Another good tool to ease sundown syndrome is to help the person relax. If he’s agitated because he’s hungry, for example, try serving food earlier or offer him a snack or something to drink until dinner is ready. If there’s a lot of commotion in the house, try taking him or her to a quieter room. If the person likes music, keep a CD player and some of their favorite songs at hand.

If he or she isn’t a music fan, a recording of ocean waves or a mountain stream might be calming. If the person is arguing with you or making unrealistic demands, try letting them know that you’re listening and talk to them in a calm voice. You might try a five-minute hand massage, or just hold their hand, or stroke their arm for a few minutes. A little reassurance can go a long way in keeping someone calm.

How to Handle Common Dementia-Related Hygiene Problems

Odd or frustrating behaviors around clean clothes, bathing, oral care, hairstyling, and shaving seldom come “out of nowhere.” Usually there’s a trigger, and ways to work around it.

Problem 1: Wearing Dirty Clothes Over and Over

Problem 2: Forgetting to Bathe

Problem 3: Refusing to Bathe

Problem 4: Not Wanting Help Bathing (But Needing It)

Problem 5: Not Taking Care of One’s Teeth

Problem 6: Trouble Grooming

What to Do When Someone With Dementia Lashes Out Physically

Physical aggression — hitting, biting, scratching, spitting, and otherwise lashing out — is not uncommon in someone in the later stages of a dementia illness such as Alzheimer’s disease.

There are two main reasons why people with dementia may turn violent:

• Personality changes brought on by the disease include loss of inhibition and self-control. A mild-mannered individual may do things he or she never would have previously.
• Emotional or physical discomfort is the top trigger for physical aggression. The person feels insecure, threatened, angry, tired, embarrassed, humiliated, or otherwise vulnerable but lacks the ability to communicate these emotions in a socially acceptable way.

How to Prevent Aggression

How to Respond in the Heat of the Moment

As a final resort

Hallucinations and Delusions

People with dementia sometimes experience delusions and/or hallucinations. Hallucinations can involve any of the five senses-a person with dementia may see, hear, smell, taste or feel something that isn’t there. Dementia affects the brain, and as a result, people who suffer from this disease can experience delusions that stem from distorted ideas and false beliefs.

Some people understand that their minds are playing tricks on them, even in the midst of experiencing a delusion or hallucination. Others are completely absorbed in the experience and believe that it is really occurring. Whatever the case, understand that these experiences can be quite vivid and upsetting.

Ask simple questions to determine whether the experience is causing any anxiety and take it from there. Instead of trying to talk your loved one “out of it,” try redirecting his or her attention, and make sure that he or she knows you are trying to help.

Creative Techniques for Talking to a Loved One With Dementia

If you have a loved one with dementia, then you know how difficult it can be to communicate with him or her. Maybe there are good or bad days. Maybe there are certain times of the day that are better or worse. The following are techniques that can be used improve communication with the person you love.

Put Yourself in Their Shoes

Imagine, for a moment, that you are getting dressed for work. You’ve worked in the same office for thirty-five years, and today is like any other weekday. Perhaps you’re having trouble tying your tie, which makes you wonder whether your daughter is home; she’s great at fixing your tie. You call out her name. She comes into the room and asks where you’re going. You tell her you’ve got ten minutes to catch the train or you’ll be late for work. Your daughter tells you that there is no train and you’ve been retired for 10 years; you have no job, but you do have dementia.

Reawakening a person to the fact that he or she has dementia used to be the social norm, even for caregivers. It was even considered a “gentle reminder” or “correction.” However, we know better now. These small reminders shatter that person’s reality, and repeated experiences can be psychologically damaging. Dementia affects the brain, but the person retains his or her humanness, and still has a mind, an ego and feelings that should be respected.

It’s cruel to force a person with dementia to accept aspects of reality that he or she cannot comprehend. So if, for example, your loved one is excited about a new job (that doesn’t exist), it’s better to offer congratulations than to correct him or her. Of course, this is sometimes easier said than done. The main coping skills you’ll need to improve communication with your loved one are redirection and validation.

Redirection

People with dementia sometimes display behaviors that seem out of character or are far too emotional for a specific situation. Sometimes their behaviors are due to delusion or hallucination. Redirection techniques divert those individuals’ attention away from the stressful event to something that is more pleasant. The following is an example:

A few pointers on redirection techniques:

• People with dementia pick up on body language. Be warm and open when redirecting, to reduce stress levels and/or tension.
• Ask pointed questions. Try to get to the bottom of any unexplained behavior. It will make it easier to redirect if you understand the context.

Validation Therapy

Validation therapy, first conceived of by Naomi Feil (MS, ACSW), runs the fine line between bluntly explaining reality and simply allowing a person with dementia to believe what he or she wants. Validation therapy often integrates redirection techniques, but it is not solely about moving an individual’s attention from one thing to another; it is also about validating feelings and emotions.

Validation therapy is based on the idea that a person with dementia may be sorting through past issues (albeit somewhat disguised) in the present. Some may even retreat to the past significantly, to restore a balanced feeling, especially if his or her present memory has begun to fail. Proponents of validation therapy say that allowing the dementia patient some measure of control will aid in self-worth and will reduce the occurrence of negative behaviors.

A few pointers on validation therapy:

• Try to understand why your loved one is behaving a certain way; what’s the trigger or underlying concern? Then figure out a way to address it. So, for example, if your loved one is hoarding or hiding items, ask what he or she is fearful of losing. Give a “safe box” that can be used to store those items.
• Don’t get caught up in whether or not something makes sense. A person with dementia may not be able to piece everything together, but their emotions are still valid. In fact, their distress or anxiety can be amplified when they aren’t being understood. Accept that your loved one’s emotions have more validity then the logic that leads to them.
• Ask specific questions about how certain actions or situations make your loved one feel. After you receive an explanation of those feelings, validate them with phrases that show your support, such as, “I’d be upset too, if that happened to me” or “I understand why you feel that way.”

Activities for Adults with Dementia

Keeping busy stimulates the brains of elderly people with dementia while boosting a sense of usefulness and accomplishment. But they lose the ability to select satisfying activities and follow through on them — so you need to initiate things to do for the person with dementia you are caring for. Too much idle time can make anyone feel lonely and unproductive, raising the risk of depression, agitation, and anger.

Tips to create successful activities for dementia patients

1. Build on activities the person with dementia has always enjoyed.

A bridge player may no longer be able to keep up, but she may enjoy holding cards and playing a simpler game, such as Old Maid or Solitaire. But introduce new ideas, too, to see what “clicks.”

2. Aim for the “sweet spot” — not too easy, not too hard.

If an activity is too simplistic or childish (like coloring books for kids), the person might feel insulted or bored. If it requires remembering sequences or is otherwise above the person’s cognitive level, it will frustrate and turn her off.

3. Take common changes of dementia into account.

The attention span shortens. Changes in recent memory make it hard to follow activities with multiple steps or instructions (such as cooking). Less self-critical people with dementia may be more open to art. Musical ability tends to be very well retained.

4. Take glitches in stride.

Don’t be a stickler for things being done the “right” way or according to rules. If it bothers you that dishes are rinsed improperly, for example, redo them yourself later without comment. The main consideration should be how the activity makes the person feel: involved, purposeful, successful.

5. Look patient, act patient, be patient.

Impatience or anger tends to make the person with dementia anxious or balky. Don’t give orders and make suggestions. Watch your body language, too: She’ll be more tuned in than you might think to a knitted brow and heavy sighs. What helps: encouraging comments and realistic praise (without talking down or using an exaggerated voice), saying thanks where appropriate.

6. Don’t challenge or argue.

Avoid asking “Why” when something goes awry. People with dementia likely don’t know why they did something peculiar (like store a paint set in the refrigerator). Gently suggest an alternative: “I don’t think the paint should get cold, so let’s store it here on the desk.” Rational arguments are useless because the person’s emotions are stronger than her logic.

7. Make activities routine.

If an activity is a hit, do it every day or two. Or do the same thing, slightly modified: folding towels one day, sheets the next. Pursue categories of activities at about the same time every day (physical or outdoor in the morning, quiet handiwork after lunch) to add comforting structure to the day.

More Ways to Keep Someone with Dementia Active