How Caregivers Can Manage Personality and Behavior Changes of Alzheimer's Disease

Caregiving is complex and may impact your emotional and physical health. But support exists.

Nurse holding hands with elderly patient.
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Caring for someone with Alzheimer's disease can be rewarding but complex. You may face new situations and emotions daily. You may also feel overwhelmed and isolated.

Caregiving has a diverse impact on physical and emotional health. Caring for a loved one may also create challenges as you both cope with a shift in your relationship's dynamics. This is a difficult, but often widespread change for many caregivers.

Put simply, this is not easy. However, there are steps you can take to manage the unique challenges of being a caregiver to someone with Alzheimer's disease.

What is Alzheimer's Disease?

Alzheimer's disease (AD) is a brain disease where cell damage causes brain changes that decline memory, thinking, and behavior. Alzheimer's disease is the most common cause of dementia.1

People often use the terms "Alzheimer's disease" and "dementia" interchangeably. However, dementia is a general term for memory and cognition-related symptoms that disrupt daily life. Alzheimer's disease causes an estimated 60-80% of dementia cases.2

In 2021, 6.2 million Americans aged 65 and older were living with Alzheimer's disease. Because the population is growing, the number of people who develop AD is rising, thereby increasing the need for caregivers. In 2020, more than 11 million Americans provided 15.3 million hours of unpaid, or "informal," care for people living with Alzheimer's disease.3

Symptoms of AD present differently from person to person. "There is not a uniform manifestation of Alzheimer's disease," said Suzanne Meeks, Ph.D., Professor in the University of Louisville's Department of Psychological and Brain Sciences. "The ways people experience the changes in their brains are as diverse as the people experiencing the changes."

Personality and Behavior Changes Due To Alzheimer's Disease

Alzheimer's disease can cause changes in your loved one's personality and behavior. You may expect these to be abrupt or severe, but early changes are hard to recognize and can often go unnoticed.

"We hear more about striking symptoms," said Kimberly Blanchard, DNP, NPC, of the Rush Alzheimer's Disease Center. "More subtle changes happen earlier and can be present every day. That can be difficult for a caregiver to recognize. You may think they're being 'lazy' or just don't want to engage, and you may not realize this is part of the disease process."

Common personality and behavior changes include:4,5,6,7

  • Growing angry, scared, and upset easily
  • Having difficulty recalling information or remembering words
  • Seeming apathetic
  • Putting less effort into personal hygiene
  • Becoming depressed and anxious
  • Appearing confused or overstimulated
  • Pacing or "shadowing you"
  • Wandering
  • Hiding things or becoming worried someone else has hidden things
  • Growing aggressive
  • Hallucinating or imagining surroundings
  • Making inappropriate sexual advances

Someone with Alzheimer's disease may be unable to acknowledge these changes. "One characteristic that can be challenging for loved ones is the person's 'denial' that anything is wrong," Dr. Meeks told Health. "I put denial in quotation marks because, in my clinical work, I often have the sense the person experiencing dementia is well aware of the changes taking place but is not able or not willing to put them into words."

How Caregiving Affects Your Health

Caregiving can negatively affect both your mental and physical health. You may experience feelings of anxiety, worry, fear, depression, and overall mental exhaustion. Other emotional changes such as anger, resentment, and frustration can also occur.4,11,12,13,14,15,17

"This is a common feeling!" Dr. Meeks emphasized. "Even if you know there is memory loss…it may be very frustrating to answer the same question 20 times in an hour! Allow yourself to be human—it is normal to be frustrated."

Caregiving can affect your physical health because you may: 8,9,10

  • Experience chronic stress
  • Have aches and pains from tasks such as carrying another person, lifting equipment, or driving long distances
  • Feel tired or lethargic due to reduced sleep
  • Increase the risk of developing health conditions as a result of skipping regular check-ups, foregoing exercise, and coping with food, alcohol, or drugs

Watching a loved one slowly lose their abilities and change their behaviors can be difficult to witness. And caregivers may grieve the person they once knew. "It's hard to lose a loved one piece by piece. The whole person is still there, and yet, not wholly there," Dr. Meeks said. "You don't get the kind of support in this grief as you get after a death, so a lot of this is processed on your own."

Coping Strategies

Coping with your loved one's changes in behavior is often easier said than done. It's OK to make mistakes as you learn what works best for you and your loved one.4,7,16,23

Some strategies that can help include reassuring the safety of your loved one and establishing daily routines. One way to build a routine is to set time aside each day to do things together. You may find that taking a daily walk, helping out with chores, or preparing meals can help keep them busy and strengthen your connection.

You may also find that redirecting their attention and spending time together to be useful. Try putting on music, watching a TV show they like, or encouraging them with a hobby they enjoy. Keep in mind that the small moments matter. You may consider trying activities such as reviewing photo albums, making crafts, or holding hands.

"These small moments can make a large difference in the overall quality of the relationship and diminish some of the burdens caregivers experience while also improving quality of life for the person experiencing dementia," Dr. Meeks said.

Dr. Meeks also recommended listening carefully and "getting in their shoes" to try to empathize with what they might be going through.

Respecting the integrity of the person you knew and know is essential. "It is hard to be treated as if you are suddenly no longer an adult," Dr. Meeks said. "Be mindful of respecting the adulthood and autonomy of the person experiencing dementia, supporting their retained abilities as much as possible."

It is important to remember that the symptoms of Alzheimer's disease can change, with some days being good days and others more challenging. "It's a fluid experience," Blanchard said. "A lot of it is learn-as-you-go." Try your best to be patient as you experiment with different coping recommendations.

Create a Team

None of this is simple. You are dealing with daily responsibilities while watching someone change. You may feel lonely or misunderstood. Creating a support team is essential.20,21

"It's so important for caregivers to have someone to talk to about their experience," said Beth Kallmyer, MSW, vice president of care and support for the Alzheimer's Association. "Just being heard makes a huge difference to people."

"Nobody can possibly understand all you are feeling and experiencing as a caregiver," said Melissa Gerald, the program director of the Division of Behavioral and Social Research at the National Institute on Aging (NIA). "It does not mean your loved ones do not want to help you. They may not know what you need or how to help you."

"Keep a to-do list of small and big tasks to outsource to people willing and available to help," Gerald added.

You can build a support team with:18,19,20

  • Family, friends, and neighbors
  • Community leaders
  • Healthcare providers
  • Support groups online and in person

Communicating with your support team is key. "It's really critical to…get together and talk about it, whether that's in person, or virtual, or on the phone," Kallmyer said. "Have really honest conversations throughout [the experience]."

Kallmyer suggested that when working with family or friends, it would be helpful to agree on what each person is going to do, not be shamed into doing more than you can, and update one another if your availability changes. "Then, people know what to expect," Kallmyer explained.

Your personality and situation will influence the support you need. Support can look like someone who:16,21

  • Listens to you
  • Lets you cry
  • Sits with the person for whom you care
  • Helps with chores
  • Looks up services or resources
  • Accompanies you to appointments

Prioritize Self-Care

Putting your needs first may seem impossible or selfish. You are not a bad person for taking care of yourself. Prioritizing self-care keeps you healthy and makes you a better caregiver.

"​​To fully care for your loved one, you have to be in a good state of health physically and mentally," Blanchard said.

Self-care can look like:

  • Watching TV or reading a book
  • Taking a bath or nap
  • Getting a massage or facial
  • Having fun with friends
  • Doing something creative or engaging in a hobby
  • Keeping appointments
  • Exercising
  • Completing chores
  • Talking to a mental healthcare provider

Caregivers often experience guilt when they take time off or enjoy themselves. But caregiving 24/7 is impractical and dangerous, Blanchard noted. "Get to your doctor's appointment in addition to getting your massage," Blanchard said. "It can be hard to step away, but you have to recognize it's important to take care of yourself."

It may seem counterintuitive to plan relaxation. Setting aside time to decide what you want to do can help. "Make a list or a plan for how you will use your time so you can make the most of your precious time off," Gerald recommended.

Respite care programs also exist that can offer caregivers time away.22 Some programs may offer services such as supervised activities, assistance with dressing and bathing, and support with laundry or meal preparation.24 "These can work," Dr. Meeks said, "if you find a good program you can trust."

Summary

Caregiving can be physically and emotionally demanding, but building a support team and practicing self-care can help you maintain connection and feel fulfilled. Validate your feelings, find people who will listen, and be kind to yourself throughout the process. You are doing the best you can.

Sources:

  1. Alzheimer's Association. What is Alzheimer's Disease?
  2. Alzheimer's Association. Dementia vs. Alzheimer's Disease: What's the Difference?
  3. Alzheimer's Association. 2019 Alzheimer's Disease Facts and Figures.
  4. National Institute on Aging. Caring for a Person With Alzheimer's Disease.
  5. Alzheimer's Association. Stages and Behaviors.
  6. Rush University Medical Center. 10 Early Signs of Alzheimer's.
  7. Blanchard, K. (2022, July 19) Personal communication [Phone interview]
  8. Schulz R, Sherwood PR. Physical and mental health effects of family caregiving. Am J Nurs. 2008;108(9 Suppl):23-27.
  9. ​​Roth DL, Fredman L, Haley WE. Informal caregiving and its impact on health: a reappraisal from population-based studies. The Gerontologist. 2015;55(2):309-319.
  10. Centers for Disease Control and Prevention. Caregiving.
  11. Moss KO, Kurzawa C, Daly B, Prince-Paul M. Identifying and addressing family caregiver anxiety. J Hosp Palliat Nurs. 2019;21(1):14-20.
  12. Harris ML, Titler MG, Hoffman GJ. Associations between Alzheimer's disease and related dementias and depressive symptoms of partner caregivers. J Appl Gerontol. 2021;40(7):772-780.
  13. Crespo M, Fernández-Lansac V. Factors associated with anger and anger expression in caregivers of elderly relatives. Aging & Mental Health. 2014;18(4):454-462.
  14. Large S, Slinger R. Grief in caregivers of persons with Alzheimer's disease and related dementia: A qualitative synthesis. Dementia. 2015;14(2):164-183.
  15. Alzheimer's Association. Caregiver Stress.
  16. Alzheimers.gov. Tips for Caregivers and Families of People With Dementia.
  17. Alzheimer's Association. Caregiver Depression.
  18. Cheng ST, Au A, Losada A, Thompson LW, Gallagher-Thompson D. Psychological interventions for dementia caregivers: what we have achieved, what we have learned. Curr Psychiatry Rep. 2019;21(7):59.
  19. Alzheimer's Association. Building a Care Team.
  20. Kallmyer, B. (2022, July 19) Personal communication [Phone interview]
  21. Gerald, M. (2022, July 19) Personal communication [Email]
  22. National Institute on Aging. What Is Respite Care?
  23. Meeks, S. (2022, July 18) Personal communication [Email]
  24. Alzheimer's Association. Respite Care.
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