NEWS Mental Health News The Emotional Toll of Caring For a Loved One With Alzheimer's Disease By Lo Styx Lo Styx Lo is a freelance journalist focused on mental health, sexual wellness and patient advocacy. She is based in Brooklyn and can be found on the internet @laurenstyx. Learn about our editorial process Updated on July 29, 2022 Fact checked Verywell Mind content is rigorously reviewed by a team of qualified and experienced fact checkers. Fact checkers review articles for factual accuracy, relevance, and timeliness. We rely on the most current and reputable sources, which are cited in the text and listed at the bottom of each article. Content is fact checked after it has been edited and before publication. Learn more. by Karen Cilli Fact checked by Karen Cilli Karen Cilli is a fact-checker for Verywell Mind. She has an extensive background in research, with 33 years of experience as a reference librarian and educator. Learn about our editorial process Share Tweet Email Print Alison Czinkota / Verywell Key Takeaways Caregiving for a loved one with Alzheimer's disease can be an isolating journey that's both physically and emotionally taxing.Seeking out folks with shared experience, assembling a care team and taking time for self-care can help prevent burnout. Alzheimer’s disease, a type of dementia that destroys memory and other important mental functions, is an unforgiving condition for which, unfortunately, there is no cure. And it can be incredibly painful to watch its progression in a loved one. As a labor of love, friends or family members often voluntarily take on the role of caregiver. But this can come at a cost to the individual providing care. A survey from the Associated Press-NORC Center for Public Affairs Research found that nearly half of long-term caregivers aren't just running errands and driving to doctor appointments, but are also performing medical care like changing catheters or inserting feeding tubes. Less than half of these individuals reported receiving training for these tasks. This kind of work can be stressful and demanding, especially for individuals who are inexperienced or unprepared. Emotional Impact Caregiving is not just a physically challenging job, but an emotionally challenging one, as well. Caregivers are often family members or friends managing their own complex feelings about the person and diagnosis, says psychotherapist Idil Ozturk, LMSW. When a loved one receives an Alzheimer’s diagnosis, it can be devastating. Feelings of fear, sadness and anger at the circumstances are likely to bubble up. Ozturk points out that anticipatory grief is also common, which occurs when the grieving process begins before the diagnosed person’s death. Kristin Papa, LCSW It is important to keep in mind that we all need support. — Kristin Papa, LCSW Serving as caregiver adds complexity to this in the form of exhaustion and irritability, which can sap mental health over time. The AP survey found that caregivers of individuals with Alzheimer's and other conditions that affect mental status experienced more stress and sadness than caregivers of individuals with other illnesses. Research shows that depression and anxiety are common. By getting to know the symptoms of the disease, you'll have a better idea of what to expect and how to deal with it, Ozturk says. Then you can more easily avoid pain and frustration. “If a person with Alzheimer's is saying ‘Where am I? I want to go home!’ they might be trying to communicate that they don't feel comfortable,” Ozturk says. “Instead of getting frustrated and saying ‘We are home!’ try asking if they need something, are they too hot or too cold? Are they hungry or tired?" People with Alzheimer’s are prone to exhibit aggressive and irritable behavior at times, which can feel hurtful and frustrating. But reframing this type of behavior as a brain malfunction rather than an attack can help a caregiver avoid resentment or take comments or behaviors too personally. Utilizing a Care Team Caregiving can be isolating, as it's demanding of both time and energy. Being unable to leave your loved one alone or dealing with low energy levels at the end of the day can lead to social isolation which can worsen mental health. It’s crucial to ask for help. "It is important to keep in mind that we all need support," says Kristin Papa, LCSW. "Many of us have a hard time asking for help even when life is overflowing. It's important to practice self compassion, recognize when we're feeling stressed and overwhelmed, and ask and accept help from other family members, friends, or community members." Kristen Osterhoudt, Alzheimer’s Disease Caregiver Support Initiative Often caregivers will wait until they are totally burnt out to ask for help. — Kristen Osterhoudt, Alzheimer’s Disease Caregiver Support Initiative Support groups can be incredibly helpful. By joining or chatting with a community of others going through same experience, you'll learn more about not only the symptoms and progression of the disease, but also insight into coping with more challenging behaviors. Assembling a strong care team and/or using respite services can reduce the burden of caregiving on a single individual. Kristen Osterhoudt, regional coordinator for education and training services for the Alzheimer’s Disease Caregiver Support Initiative suggests making a list of needs, like planning doctor appointments, medication management, household chores, grocery runs and meal prep, then divvying up those tasks among the team. "Often caregivers will wait until they are totally burnt out to ask for help," Osterhoudt says. "Don't wait. Reach out and get the help you need to take care of yourself and the individual." It's easy to take on too much when it comes to our loved ones, but boundaries are important. While the person's health and safety may feel like your top priority, it's important to keep in mind that they're not the only ones that need, and deserve, care. New Research Finds Possible Link Between ADHD and Dementia Making Time for Self-Care Licensed clinical psychologist Kathy Nickerson, PhD, served as her father's caregiver for eight years as he struggled with Parkinson's disease and dementia. While she admits it was difficult, she's glad to have given him the end-of-life care that she wishes everyone could have. To do this, practicing self-care is absolutely necessary. "You simply cannot take care of anyone else if you do not take care of yourself," Nickerson says. "Even if it feels easy to be a caregiver now, slow down and pace yourself. This is a marathon, not a sprint." Kathy Nickerson, PhD You simply cannot take care of anyone else if you do not take care of yourself. Even if it feels easy to be a caregiver now, slow down and pace yourself. This is a marathon, not a sprint. — Kathy Nickerson, PhD She recommends taking breaks and making time for activities that help you recharge, whether that looks like meditation, exercise, reading books or taking day trips. Carving out time to rest, eat well and attend your own doctor's appointments is just as important. It can be difficult to separate your role as caregiver from your normal role in their lives, so it's important to continue to find ways to enjoy your relationship with the person. This could be through meaningful activities like gardening or listening to music. "It is a very hard, messy and often thankless job," Nickerson says. "Remind yourself about why you are giving this gift and look for the bright spots. There will be nice moments mixed in with the mundane and moments of clarity when your loved one will connect with you. Focus on what you can be grateful for, focus on just today and being in the moment." What This Means For You You can only provide adequate care for a loved one with Alzheimer's disease if you're properly caring for yourself, as well. How Robotic Pets Are Helping Older Adults Facing Dementia and Isolation 3 Sources Verywell Mind uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read our editorial process to learn more about how we fact-check and keep our content accurate, reliable, and trustworthy. Weller J, Budson A. Current understanding of Alzheimer’s disease diagnosis and treatment. F1000Res. 2018;7:1161. doi:10.12688/f1000research.14506.1 The Associated Press-NORC Center for Public Affairs Research. AP-NORC poll: Adult caregivers overwhelmed and undertrained. Published October 5, 2017. Ma M, Dorstyn D, Ward L, Prentice S. Alzheimers’ disease and caregiving: A meta-analytic review comparing the mental health of primary carers to controls. Aging Ment Health. 2017;22(11):1395-1405. doi:10.1080/13607863.2017.1370689 See Our Editorial Process Meet Our Review Board Share Feedback Was this page helpful? Thanks for your feedback! What is your feedback? Other Helpful Report an Error Submit Speak to a Therapist Online Advertiser Disclosure × The offers that appear in this table are from partnerships from which Verywell Mind receives compensation.