When one person develops dementia, the effects ripple through the entire family. Relationships change. Routines are disrupted. New demands fall on everyone involved. Caregiving becomes a shared experience—and sometimes a shared burden.

"This often compromises caregivers' own health—physically, medically, emotionally, and mentally," says Juliet Holt Klinger, MA, gerontologist and dementia care expert.. "It can increase financial expenses and place an additional burden causing stress and strain not only on the relationship with the person living with dementia, but also with other family members as they try to share the responsibility."

As dementia progresses, the entire family system may need to adapt. Spouses, adult children, and siblings often take on new responsibilities unexpectedly. The ways people communicate and interact often shift, and once-familiar routines may no longer work.

There’s no single roadmap for navigating this diagnosis. But understanding its wider impact can help families stay grounded, connected, and supported. This guide explores how dementia affects families and offers suggestions for managing the emotional, logistical, and relational challenges that often arise.

Emotional and Mental Health Impacts

The emotional effects of dementia on caregivers and family members are often underestimated. Grief can begin long before a loved one is gone, triggered by changes in personality, communication, and connection. Watching someone you love become confused, withdrawn, or agitated can bring intense sadness.

"Even the most patient person can ‘lose it’ as this can be very daunting," Holt Klinger explains. "This mind screw of knowing the person—but yet not knowing them—as their behaviors and abilities change is stressful and plays quite a powerful effect on caregivers."

It’s common for caregivers to feel overwhelmed, exhausted, or even angry—and then feel guilty for having those emotions. Guilt for being impatient. Guilt for needing space. Guilt for wishing things were different. At the same time, shifting roles can cause strain within the family. A partner becomes a caregiver. A child becomes a decision-maker. Siblings may disagree on the right path forward.

When unspoken tension builds up, caregivers may feel isolated and unsure where to turn. Open communication and early support can help reduce long-term conflict.

The Financial and Logistical Toll

Dementia can also bring significant financial and practical challenges. Home care, memory care, and assisted living services often involve high out-of-pocket costs, even with insurance. These expenses can stretch over years and affect more than one generation’s finances.

In addition to managing care, many families face complex decisions around power of attorney, legal planning, and daily money management. These tasks often fall to one primary caregiver, creating additional stress and responsibility.

Working with professionals—such as elder law attorneys or financial advisors—early in the process can make a meaningful difference and help reduce family conflict.

Building a Family Support Network

When dementia enters a family’s life, no one should have to carry the weight alone. A shared system of support makes caregiving more manageable and emotionally sustainable.

Start by having honest family conversations about everyone’s availability and strengths. One person might oversee finances, while another coordinates medical appointments. When roles are clearly understood, misunderstandings and resentment can be minimized.

"Sometimes family members are unable or unwilling to help, which again causes strain on the family dynamic. The person who suffers most is the one with dementia—and the primary caregiver," Holt Klinger notes.

Outside help can be a crucial part of the support structure. Social workers, dementia-specific support groups, and respite care can relieve pressure and provide tools for long-term care. Asking for help is a strength, not a shortcoming.

How elbi Eases Family Coordination

elbi helps families stay connected by offering emotional support guidance for managing family dynamics. These strategies can help address caregiver conflict, manage stress, and encourage honest dialogue.

When families communicate clearly and support each other, care becomes more consistent and compassionate—for everyone.

It can be frustrating to hear the same story for the third time in one conversation. When a parent or partner repeats themselves often, it may be an early clue that something deeper is going on. Understanding the cause can help you respond with more empathy and clarity.

Why People With Dementia Repeat Stories

Repetition is one of the most common early signs of cognitive change. It’s often linked to short-term memory problems that prevent the brain from recording recent events.

Key Causes:

• Short-term memory loss affects the brain’s ability to retain new information. A person may not remember that they already told a story or asked a question.
• Changes in the hippocampus, the area of the brain responsible for memory formation, can make it difficult to store and retrieve recent conversations.

People who repeat themselves aren’t doing it intentionally. Their brains may not recognize the event as something already shared.

How to Gently Respond Without Hurting Feelings

It’s tempting to say, “You already told me that,” but direct corrections can make a person feel embarrassed, defensive, or confused.

Try these approaches instead:

• Redirect or change the subject. Gently shift the conversation to something comforting or engaging.
• Ask questions about the story being repeated. This lets your loved one feel heard without being corrected.
• Use distraction, such as offering a snack or suggesting a walk, to change the moment’s focus.
  
  

Compassionate communication helps preserve emotional well-being and ease distress in those living with memory issues.

Other Early Signs to Watch For

Repetition may be just one part of a broader pattern. According to Juliet Holt Klinger, MA, gerontologist and dementia care expert, other early signs of dementia to look for include:

• Getting lost in familiar places or disoriented about the time or day
• Trouble finding the right words or substituting unusual words
• Misplacing things in odd locations (like putting keys in the refrigerator)
• Difficulty performing familiar tasks, like managing finances or cooking
• Minor judgment losses, such as dressing inappropriately for the weather or season, overspending or over-shopping
• Changes in mood or behavior, including frustration with tasks, depressed mood, or quickness to anger.
• Loss of initiative to start new tasks or leave the home, withdrawal from hobbies, or becoming reclusive

When several signs appear together, it’s a good idea to consult a doctor.

Caregiving Tools That Meet You Where You Are

Caring for someone who repeats themselves can be exhausting, especially when you’re unsure what’s normal and what’s not. That’s why elbi includes a way to chat to get guidance on strategies:

• Tips for memory-friendly communication, including scripts for redirecting conversations gently
• Early-stage support suggestions, from planning doctor visits to organizing important medical details

Seeing the Changes Is Hard—But You’re Not Alone

If your loved one keeps repeating themselves, it could be more than age-related forgetfulness. That can be hard to face. But noticing what’s happening—without judgment—can help you figure out what kind of care they need.

You don’t have to have everything figured out right away. Start by writing things down. Talk to someone you trust. Ask questions at the next doctor’s visit.

Even small steps can bring more understanding, more patience, and more steadiness as you move forward together.

If your mom is seeing things that aren’t real, it can be deeply unsettling—for both of you. These experiences are often caused by changes in the brain due to dementia. They can be confusing, sometimes even frightening. And they may make it harder to connect in the ways you once did. But even in those moments, your presence and care can offer comfort.

This article explains what dementia-related hallucinations are, what causes them, and how you can respond with calm, compassionate support.

What a hallucination really is

“A hallucination is defined as a false perception of objects or events involving one or more of the senses: sight, sound, smell, touch and taste,” says Juliet Holt Klinger, MA, gerontologist and dementia care expert. “Hallucinations are very real events for the person experiencing them but are not real to anyone else.”

Visual hallucinations with dementia can often involve seeing animals, people, or flashing lights that are not there. While visual hallucinations are most common in dementia, they may also take the form of:

• Auditory: hearing voices or sounds that aren’t present
  
• Olfactory: smelling things that aren’t there
  
• Tactile: feeling things on the skin that don’t exist

Some hallucinations can be pleasant, but others can be frightening or perceived as a threat to the person with dementia.

What causes hallucinations in older adults?

In older adults, especially those with dementia, hallucinations and delusions often have medical or neurological roots.

“Frequent and very clear visual hallucinations are one of the most common symptoms of Lewy body dementia but can also occur with Alzheimer’s disease and other forms of dementia,” says Holt Klinger.

Other common causes include:

• Parkinson’s disease, where hallucinations are more likely after long-term medication use or in advanced stages.
• Medication side effects, especially from drugs used for sleep, pain, or anxiety.
• Vision loss, such as Charles Bonnet syndrome, where people with visual impairment see things that aren't there.
• Delirium, often caused by infections like urinary tract infections (UTIs) or dehydration.

Understanding the root cause of dementia hallucinations and delusions can help guide how you respond—and how you speak to healthcare professionals.

Is it a hallucination or a misperception?

Not everything that seems like a hallucination is one. Sometimes, your mom may be experiencing a visual misperception, not a hallucination. These happen when the brain misinterprets real information coming from the eyes, especially common in dementia.

“There can be damage to the area of the brain that helps us interpret the information that our sensory organs are bringing in—such as the eyes,” explains Holt Klinger. “That damage causes a symptom known as agnosia, which is essentially the misinterpretation of the meaning of objects and spaces.”

For example, your mom may look in the mirror and ask, “Why is that old woman in my bathroom?” Her brain no longer understands the concept of a reflection, or may not even recognize her own aging face. Or she might try to feed people in framed photos, unable to process that photographs aren’t real people.

“This is not a hallucination,” Holt Klinger says. “It’s a visual misinterpretation.”

This distinction is important: hallucinations may require medication, especially if they are distressing, but misperceptions often do not. The response—and the need for medical treatment—can differ significantly.

How to respond with empathy and care

Even if the hallucination isn’t real, the emotion behind it is. It’s important to stay calm and focus on comfort and safety.

Ways to respond:

• Validate their feelings: Say something like, “That sounds upsetting,” rather than denying what they’re experiencing.
• Avoid correcting or arguing: Confrontation may escalate fear or confusion. Holt Klinger emphasizes that it is never helpful to try to dissuade someone from believing what they see or feel—even if the hallucination is causing distress.
• Use gentle distraction: Redirect attention with a walk, a snack, or a soothing activity.
• Remove triggers: Reflective surfaces, low lighting, or certain TV programs can sometimes spark hallucinations.

Holt Klinger offers this caregiver-tested language:

“It must be scary to see that man in your room. I’m going to ask him to leave right now.”

Staying present, calm, and connected helps maintain trust—even when your loved one’s reality is different from your own.

When to seek medical advice

Some hallucinations are short-term and treatable. Others may be signs of neurological progression. Either way, it’s important to investigate them with a healthcare provider.

Contact a doctor if:

• The hallucinations are new or increasing in frequency
• Your mom seems confused, agitated, or scared
• There are other symptoms, like fever, change in appetite, or trouble walking

A primary care doctor may refer you to a neurologist or geriatric psychiatrist for further evaluation. They can rule out infections, medication interactions, or neurological conditions. changes.

How elbi can help

elbi provides caregiver-focused guidance to help you track changes, understand patterns, and respond more effectively when hallucinations arise.

• Just chat with elbi whenever you notice changes so elbi can provide guidance and keep track 
• Calming strategies, including strategies for redirecting language
• Care tips tailored to hallucination episodes, so you can feel less overwhelmed and more in control

elbi supports families through all stages of dementia, including the confusing and emotional moments like this one.

Caring through confusion

Dementia hallucinations can be upsetting, but they’re often a part of how certain types of dementia affect the brain. With the right tools, calm communication, and professional support, you can help your mom feel safe and supported—even in confusing moments.

You’re not alone. elbi is here to walk alongside you, helping you respond with compassion, clarity, and care.

Disclaimer: This information is provided as a service and does not constitute legal advice. Please consult a professional for any legal advice.

Caring for a parent with dementia can feel overwhelming, especially when it comes to navigating legal decisions. As an adult child or caregiver, you’re not only grappling with the reality of your parent’s diagnosis but also stepping into a role that may require making tough decisions about their care, finances, and future. While these steps can feel overwhelming, addressing legal matters early ensures your parent’s wishes are honored and provides clarity for the road ahead. 

Here’s a step-by-step guide to help you understand what to do legally when a parent has dementia:

1. Establish Power of Attorney (POA)

Taking control of your parent’s legal and financial decisions is a significant responsibility, but it’s helpful to act while your parent can still grant authority. A POA allows you to make decisions on their behalf when they’re no longer able to do so.

• Key Tip: There are two types of POA:
  
  • Durable Power of Attorney: For managing financial and legal affairs.
  • Healthcare Power of Attorney: For making medical decisions in alignment with their preferences.

Without these documents, accessing accounts or making care decisions can become complicated and costly. 

2. Create or update a will

Ensuring your parent has a valid and up-to-date will is a critical step. This document reflects how they want their assets distributed and prevents potential disputes among family members.

• Key Tip: If your parent already has a will, review it together to ensure it aligns with their current wishes. If not, consult an estate planning attorney to draft one. 

3. Set Up Advance Directives

Advance directives provide clear instructions about your parent’s medical care, easing the burden of decision-making during difficult moments. Directives to discuss:

• Living Will: Outlines your parent’s preferences for life-sustaining treatments.
  
• Do Not Resuscitate (DNR) Order: Indicates their wishes about CPR in emergencies.
• Key Tip: These documents not only honor your parent's choices but also reduce the emotional strain on family members during critical situations.

4. Review Financial Accounts and Beneficiaries

Take the time to review all financial accounts, including banking and investment accounts, retirement plans, and insurance policies, to ensure they’re in order. Beneficiaries should reflect your parent’s current intentions, avoiding complications later.

• Key Tip: Consider joint ownership or transfer-on-death (TOD) designations to simplify access to funds if needed. 

5. Explore Medicaid and Long-Term Care Planning

Paying for dementia care is one of the biggest challenges caregivers face. Medicaid can help cover costs, but eligibility and applications can be complex. Start early to understand how to structure your parent’s finances.

• Key Tip: Work with an elder law attorney to plan for Medicaid while staying compliant with its five-year look-back period. 

6. Establish Guardianship or Conservatorship (If Necessary)

If your parent can no longer make decisions and no POA is in place, you may need to seek legal guardianship or conservatorship through the courts.

• Key Tip: Guardianship covers personal and medical decisions, while conservatorship pertains to financial matters. This process can be emotionally taxing, so enlist legal help to guide you. 

7. Organize Important Documents

Having all key documents in one place makes it easier to manage legal and financial affairs as needed. Essential documents include:

• Birth certificate
  
• Social Security card
  
• Insurance policies
  
• Property deeds
  
• Marriage certificate (if applicable)
  
• Key Tip: Create both physical and digital copies for easy access.

8. Consult an Elder Law Attorney

Given the complexity of these issues, an elder law attorney can be a valuable partner in navigating the legal system and protecting your parent’s interests.

• Key Tip: Choose an attorney with specific expertise in elder care or dementia-related planning for the most effective guidance. 

Final Thoughts

Taking legal steps for a parent with dementia is not easy—emotionally or logistically—but it’s an act of love and responsibility. By addressing these issues early, you can ensure their wishes are respected and create a clearer path for caregiving. While the process may feel daunting, remember that seeking professional help and leaning on your support system can make this journey more manageable.

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When someone you love is living with dementia, daily life can feel like a constant puzzle that you’re solving with heart, patience, and a lot of creativity. As a caregiver, creating a system of effective reminders can ease the challenges your loved one faces while fostering independence and confidence. Below, you’ll find realistic, research-backed ways to create daily reminder systems that work—and feel good—for both of you.

Why daily reminders matter for people with dementia

Dementia affects memory, decision-making, and the ability to process information, often making it difficult for individuals to remember daily tasks. The Alzheimer’s Association states that structured routines and visual aids can reduce confusion and anxiety in people living with dementia. 

Effective reminder strategies

1. Use a centralized calendar or planner

• Place a large, easy-to-read calendar in a visible spot, such as the kitchen or living room. Write down daily appointments, activities, and meal times.
• The National Institute on Aging (NIA) recommends using written schedules to help individuals stay oriented and understand what to expect. using written schedules to help individuals stay oriented and understand what to expect.

2. Leverage technology for alerts

• Set up phone or smart speaker reminders for essential tasks, such as taking medications or preparing meals. Devices like Alexa and Google Home can offer verbal prompts.
• Solutions like elbi are specifically designed to support dementia caregivers by providing practical tips tailored to your loved one’s needs.

3. Create visual cues and labels

• Use sticky notes or labeled bins to organize items and remind your loved one of their purpose. For example, a note on the bathroom mirror can say, “Brush your teeth.”
• Label drawers, cabinets, and rooms to help them locate items without frustration.
• A Mayo Clinic guide highlights that visual prompts can make everyday tasks more manageable for dementia patients. highlights that visual prompts can make everyday tasks more manageable for dementia patients.

4. Establish a consistent routine

• Structure each day similarly to provide a sense of stability and familiarity. Plan activities like meals, exercise, and relaxation at the same times daily.
• The Alzheimer’s Association recommends establishing routines to help reduce anxiety by providing predictability. routines to help reduce anxiety by providing predictability.

5. Incorporate pictures and visual schedules

• Use photos or illustrations to complement written reminders, especially for tasks like dressing or meal preparation.
• Visual schedules can provide step-by-step guidance, such as an illustrated guide to preparing breakfast.

Encouraging independence

While reminders are essential, balancing support with independence is crucial. Encourage your loved one to perform manageable tasks on their own. For example, breaking complex activities into smaller steps can empower them to participate actively in their care.

The Centers for Disease Control and Prevention (CDC) emphasizes promoting autonomy while providing necessary assistance to ensure safety and comfort. promoting autonomy while providing necessary assistance to ensure safety and comfort.

Using elbi for dementia care

elbi simplifies caregiving with features designed to ease daily management for dementia patients. With elbi, you can:

• Access proven, personalized strategies to reduce stress and improve connection for people with dementia and their caregivers.
• Explore caregiver resources tailored specifically to dementia-related challenges.

Caring for yourself

As a caregiver, your well-being is equally important. Ensure you take time to recharge and access available resources. The NIA advises caregivers to seek help and use tools to alleviate stress and prevent burnout. seeking help and using caregiver tools to alleviate stress and prevent burnout.

Supporting your loved one

Creating a supportive environment with effective daily reminders can significantly improve the quality of life for dementia patients. Scientific studies support that structured routines and memory aids can enhance cognitive function and reduce behavioral challenges associated with dementia. 

By combining scientific insights with practical tools, caregivers can provide compassionate, organized, and effective care. elbi’s personalized guidance ensures caregivers have access to resources that empower them to navigate the complexities of dementia care confidently. Together, these approaches foster dignity, independence, and a higher quality of life for both caregivers and their loved ones. 

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When you're caring for someone with dementia, words matter more than ever. Certain phrases can unintentionally cause frustration, confusion, or distress. Knowing what not to say to someone with dementia helps you build trust, reduce stress, and maintain connection—even in the most challenging moments.

At elbi, we encourage caregivers to start from a place of calm and empathy. If you feel overwhelmed, take a breath. Pausing helps you approach conversations in a way that feels supportive, not stressful.

Below are 10 common phrases to avoid—and expert-backed alternatives to use instead. These swaps are grounded in expertise and emotional insight, so you can feel more confident every time you speak.

1. “Don’t you remember?”

Why to avoid it: This question puts a spotlight on memory loss, which can feel shaming or upsetting.

Say this instead: Offer supportive prompts or context without calling attention to forgetfulness.

Expert tip: Juliet Holt Klinger, elbi’s gerontologist and dementia care advisor, suggests offering support another way, noting, "Quizzing someone with dementia almost always causes them stress as their memory issues get highlighted. Instead, try to supply them with information that you do know and help them with cues to remember for example; “You always shared a story about _____(supply a few details)___how did that go?”

2. “We’ve already talked about this.”

Why to avoid it: Pointing out repetition often feels frustrating and can feel dismissive. 

Say this instead: Gently re-share information or redirect with warmth.

Expert tip: Holt Kingler suggests a softer approach. “Reminding them that you are having to repeat yourself might relieve a certain amount of your own annoyance, but it will only serve to remind them of their struggles with memory. It will not change how often you need to repeat yourself. Instead, try offering them gentle reminders of your previous conversations like ‘We discussed before that…’”

3. “That’s not what happened.”

Why to avoid it: Correcting someone with dementia can cause distress or lead to arguments.

Say this instead: Focus on validating their emotions and redirect the conversation in a more constructive direction. 

Expert tip: Holt Klinger advises, “Any form of arguing is generally a big no-no when communicating with someone with dementia, but especially if you are trying to reason them out of a delusion or misconception. Remember that the definition of delusion is a false, fixed belief, meaning that no amount of you trying to convince them otherwise will deter them from believing it. Instead, try asking them more about their belief to see if you can get any clues as to what problem the belief might be helping them to solve in their mind. For example, if they believe that you stole their wallet, the issue is really that the wallet is missing to them. Helping to find the wallet may help them to cease the belief that it was stolen, etc.”

4. “You’re wrong.”

Why to avoid it: Being corrected can feel embarrassing and discouraging.

Say this instead: Validate their perspective and gently change the topic.

5. “Why are you acting like this?”

Why to avoid it: Many behavioral changes are beyond their control, and this question can cause feelings of shame.  

Say this instead: Respond with empathy by saying, "I see you're upset. How can I help?" 

Expert tip: The Alzheimer's Association suggests focusing on emotional needs being revealed by behavior. 

6. “Calm down; there’s nothing to worry about.”

Why to avoid it: Dismissing fears doesn’t make them go away—it can escalate anxiety.

Say this instead: Acknowledge their feelings and say, “I’m here to help. Let’s work through this together.”

7. “Hurry up.”

Why to avoid it: Dementia slows processing and rushing only adds pressure.

Say this instead: Give them extra time and maintain a gentle pace.

Expert tip: Holt Klinger highlights the importance of patience, noting, "I see people rushing loved ones when they may be struggling to find words or understand." Slowing down can make enough space for communication to process more positively.

8. “I know you can do better.”

Why to avoid it: This phrase can make a person with dementia feel shame for not being able to do something they could in the past.

Say this instead: Try giving them tasks to complete that you know will be successful.

Expert tip: Holt Klinger says, ”Dementia can sometimes cause someone to not be able to do something well that they previously understood. With Alzheimer’s, these changes will be more noticeable to you as the caregiver as they occur more gradually, but in other dementias such as Lewy Body dementia, abilities may fluctuate from minute to minute, and it may seem as though your person is lazy or not really trying. It is critical to remember that for the most part, people with dementia are doing the best job they can and are not choosing to do poorly. Instead, try giving them tasks to complete that are ‘failure-free’ and where you know they will be successful and for more complex tasks, offer them enough time, the proper amount of prompting and support with each step to get things right.” 

9. “You’re not making sense.”

Why to avoid it: This phrase can be discouraging and lead to withdrawal from communication entirely. 

Say this instead: “Can you help me understand what you mean?” Then look for clues in their language as they may not be able to find the exact word, but are likely referring to something very real to them.

10. “You don’t look like you have dementia.”

Why to avoid it: This minimizes their lived experience and may feel invalidating.

Say this instead: Focus on the individual's current needs and feelings without making assumptions based on appearance.  

Expert tip: Avoiding appearance-based assumptions is crucial, as noted by dementia care experts. 

Final Thoughts: Focus on their feelings and choose words that comfort 

Caregiving is a long journey and conversations can be one of the most tender–and tough–parts. Knowing what not to say to someone with dementia is just as important as knowing how to respond with kindness.

With practice, patience, and the right tools, your words can become a source of safety and support.

For more expert guidance and resources on navigating dementia care, try elbi. elbi’s expert-powered platform provides actionable advice tailored to support caregivers and their loved ones with dementia. 

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Liz Tenety brings nearly two decades of experience in digital media. A former Washington Post editor and co-founder of Motherly—a well-being brand helping mothers thrive—she now coaches founders through Google’s Startup Labs while supporting female founders. Liz also hosts the Webby Award-winning show, The Motherly Podcast.  

A 10-step checklist for caregivers of parents with dementia

Caring for a parent or loved ones with dementia is a profound responsibility that can challenge even the most prepared caregivers. Proactively addressing your loved one’s needs, as well as your own, can help you navigate this journey with clarity and resilience. This Caring for Aging Parents Checklist offers actionable steps to guide caregivers, with expert insights from elbi’s dementia care professionals.

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1. Center your care: Assess your personal resources

Before diving into caregiving, take inventory of your resources:

• Time: How much can you realistically dedicate without neglecting other responsibilities?
• Money: Can you afford external caregiving resources such as professional aides, adult day programs, or respite care?
• Support systems: Identify family, friends, or community services that can assist.

Juliet Holt Klinger, elbi’s gerontologist and dementia care advisor, emphasizes, “It’s very important to determine as a family if the duties of caregiving are sustainable. Primary caregivers need to regularly evaluate their own health and well-being to ensure they are not putting their own health at undue risk.”
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2. Communicate with family members and caregivers

Caregiving should not be a solitary journey. Proactively communicate with siblings and other family members to:

• Share responsibilities: Divide caregiving tasks to avoid burnout.
• Align on decisions: Discuss your loved one’s preferences and care needs as a team.‍
• Provide updates: Keep everyone informed about the progression of the disease.

3. Discuss and understand the preferences of your loved one

If your loved one is still able, engage them in conversations about their wishes:

• Living arrangements: Do they prefer to stay at home or move to community if needed?
• Medical care: Understand their preferences for treatments and interventions.‍
• End-of-life wishes: Discuss funeral arrangements, burial or cremation preferences, and any religious or spiritual considerations.

4. Ensure legal and financial affairs are in order

Managing finances and legal responsibilities early is crucial as dementia progresses. Key steps include:

• Power of attorney: Assign financial and healthcare power of attorney to a trusted individual.
• Conservatorship: Obtain legal authority to manage your parent’s affairs, if needed.
• Bank accounts and bills: Gain access to accounts and set up automatic bill payments.
• Long-term care plans: Explore Medicaid, Medicare, and long-term care insurance to prepare for future expenses.

5. Think in stages of care

Caregiving for dementia involves adapting to your loved one’s changing needs:

• Early stage: Focus on maintaining their independence while establishing a support system.
• Middle stage: Address increasing safety concerns, such as wandering, and provide hands-on assistance with daily tasks.
• Late stage: Prepare for more intensive care, including feeding, hygiene, and comfort measures. 

Linda Buscemi, PhD, elbi's co-founder and chief clinical officer, highlights the importance of facing the realities of the diagnosis as early as possible: “Recognizing there is change is important. Trying to keep your life as it was without adjusting for dementia may lead to more frustrations.”

6. Prioritize your mental and emotional well-being

Caregivers often neglect their own needs, but maintaining your health is critical to providing effective care.

• Set boundaries: Ensure your loved one’s needs do not eclipse your own well-being.
• Seek support: Utilize resources such as support groups, counseling, or elbi’s caregiver tools.‍
• Reframe your role: Buscemi advises, “Realizing how you see the person and your role in their life may reduce strain and stress as their personality changes.”

7. Explore external support options

Caregiving doesn’t have to be done alone. Consider these resources:

• Adult day programs: Provide supervision and socialization for your parent while giving you a break.
• Respite care: Temporary caregiving services to allow you time to rest or focus on other priorities.‍
• Professional caregivers: Hire in-home aides for tasks such as bathing, dressing, and mobility support.

8. Plan for end-of-life care

End-of-life planning can be a sensitive but essential part of caregiving:

• Advanced directives: Document their wishes for life-sustaining treatments, such as resuscitation or ventilators.
• Funeral and burial preferences: Discuss burial or cremation options, locations, and any specific religious or cultural rituals.‍
• Legacy: Record your loved one’s life stories, achievements, and messages for future generations.

9. Embrace tools to cope with the emotional challenges

Caring for a parent with dementia may feel like navigating an emotional minefield. Linda Buscemi notes, “Watching someone you love decline is difficult. Understanding your triggers and changing the narrative can reduce strain and help you cope.” Tools like elbi’s caregiver support platform can provide practical and emotional support.

10. Stay flexible and proactive

Dementia caregiving is an ever-changing journey. By planning ahead, leaning on support systems, and prioritizing your own well-being, you can provide compassionate care for your loved one while preserving your own quality of life.

This checklist ensures you’re equipped to handle the challenges of dementia caregiving while keeping yourself grounded and supported.

For more tips and expert advice, visit elbi’s caregiver resources. 

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Liz Tenety brings nearly two decades of experience in digital media. A former Washington Post editor and co-founder of Motherly—a well-being brand helping mothers thrive—she now coaches founders through Google’s Startup Labs while supporting female founders. Liz also hosts the Webby Award-winning show, The Motherly Podcast.  

Ask elbi: My parent was not angry before, but as the dementia progresses, the aggression is worsening. How can I manage this?

It can be overwhelming to deal with anger in a parent or loved one with dementia, especially when the behavior is out of place from the person you once knew. Here, experts share insight on what causes anger in people living with dementia, and how caregivers can best care for themselves and people with dementia under their care.

1. What caregivers need to know
2. Why anger occurs in people living with Alzheimer's and other forms of dementias
3. How to respond when a person living with dementia is angry
4. Physical safety for aggression
5. Feeling overwhelmed as a caregiver
6. Well-being for caregivers of people exhibiting anger and aggression

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What caregivers need to know

Coping with the changes brought on by dementia can be a very frustrating experience for the person living with dementia and those around them.

It may seem to caregivers as if the person living with dementia has a new tendency towards anger that wasn’t a part of their personality before dementia. Understanding a little bit about how dementia affects the brain can help to explain some of this new level of anger. 

Caregivers may notice that the person they are caring for displays a new tendency towards anger, which can be overwhelming. 

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Why anger occurs in people living with Alzheimer's and other forms of dementias

The frontal lobe of the brain (the area behind the forehead), is the center of the brain that is responsible in part for how we behave. In a brain without dementia, the frontal lobe acts as a regulator to our emotional responses; it reminds us that responding in a certain way may be inappropriate. Damage to the frontal lobe of the brain, particularly in Alzheimer's disease, can lead to increased anger or aggression, as this area is responsible for regulating behavior. When the frontal lobe is damaged by dementia, the brain no longer reminds the person to regulate their anger and they may have outbursts that are out of character for them. 

Environmental factors like loud noises, physical clutter, and personal space invasion can also contribute to anger or aggression. Additionally, the frustration stemming from memory loss and mixed-up memories can exacerbate these behaviors. 

Empathetically understanding these triggers is crucial for caregivers to respond appropriately and prevent escalation.

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How to respond when a person living with dementia is angry

When a person with dementia becomes angry, responding with empathy and understanding is vital. Imagine the confusion and frustration they might feel due to their cognitive impairments. Use calm and soothing verbal communication, maintain eye contact, and ensure you are not invading their personal space. Avoid physical contact if it seems to aggravate them. Instead, acknowledge their feelings by saying things like, "I can see you're upset. Let's take a moment to calm down." Give them space and time to process their emotions without forcing them to do anything that might lead to anger.

The best way to avoid your loved one getting overly angry at you in your interactions is to learn to prevent the response by being mindful of how much frustration you may be causing, even without meaning to. Many of the things you need to accomplish as a caregiver for a person living with dementia involve placing demands on them. The trick is to meter out the pressure you are placing on them and to recognize where their “stress threshold” may be. When these incidents first occur, it’s good to take note and think about what happened just before. Ask yourself, “Was I pushing them to do something that they can’t remember how to do?” or “Was I rushing them through the task?” or “Have I asked them to do too many things at once?”. Typically, the answer lies somewhere in there.  

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Physical safety for aggression

Ensuring physical safety when dealing with aggressive behavior in people with dementia is paramount. Caregivers may clear any physical clutter that might cause accidents and create a calm environment free from loud noises and other triggers. If the person becomes physically violent, maintain a safe distance to avoid injury. It's essential to avoid physical restraint unless absolutely necessary, as it can lead to further aggression and is disempowering to people with dementia. Instead, use non-threatening body language and a calm tone of voice to de-escalate the situation.

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Feeling overwhelmed as a caregiver

Caring for someone with dementia who exhibits anger and aggression can make caregivers feel overwhelmed. It's crucial to recognize your own emotional limits and seek support when needed. The intense stress of managing aggressive behavior can lead to caregiver burnout. Therefore, it’s important to take regular breaks, seek support from friends, family, or support groups, and consider professional help if necessary. Remember, it's okay to feel frustrated and seek help; caring for yourself is as important as caring for the person with dementia.

As a caregiver, you will experience your own set of emotions in these situations that shouldn’t be ignored. Many will give you the advice, “just don’t take it personally” which is much easier said than done. For caregivers who are caring for an angry parent, these situations might open old wounds and emotional scars that we don’t want to revisit. An angry parent can trigger any child, no matter how old, into feelings of shame and guilt and feelings of failure which make it hard to have confidence as a caregiver. For spousal caregivers the reaction may trigger very different emotions. Caregivers who are taking care of a spouse may expect their partner to react and respond the same way they always have in the relationship, and this can cause problems. 

It is important to not let the anger escalate to resistance as you provide care and if the person you are caring for is consistently having outbursts of anger when you are trying to help, it is time for a new approach. 

elbi can help you as you work through each challenging care situation to develop strategies to prevent the escalation of frustration for you both. 

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Well-being for caregivers of people exhibiting anger and aggression

The wellbeing of caregivers is vital when managing anger and aggression in people with dementia. Practicing self-care by setting boundaries, taking time for personal activities, and seeking emotional support is essential. Managing stress through relaxation techniques and staying informed about dementia can also improve your ability to care for the person with dementia. Addressing your own needs will better equip you to handle challenging behaviors and ensure both you and the person you are caring for maintain a better quality of life.

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By understanding why anger occurs, learning how to respond effectively, and taking care of your own wellbeing, you can create a safer and more supportive environment for both you and the person with dementia for whom you care.

Ask elbi: What should I know about communicating with my loved one who's living with dementia?

When caring for a person with Alzheimer’s or other forms of dementia, it's normal to have questions about how to best communicate. Remember that your body language, mood and tone of voice all play a role in how your communication is received. Here are expert tips on how to understand communication changes and best practices for how to communicate with someone with dementia.

1. How to talk to someone with dementia: A guide for caregivers

2. Dementia and language: What to Know

3. How to communicate with a person living with dementia

4. Non-verbal, facial, and body language communication with a person with dementia 

5. ‘Bad days’ and memory loss when living with dementia

6. Talking to a person with dementia—stages of communication

How to talk to someone with dementia: A guide for caregivers

Talking effectively with a person with dementia requires understanding, patience, and potentially adapting your previous ways of communicating, which can be challenging for caregivers. An important first step is to learn how dementia might be affecting your loved one’s ability to communicate and then you can begin to alter your approach.

Dementia impacts both expressive and receptive language abilities, which means individuals with dementia may have difficulty expressing themselves verbally and understanding what others say. 

Caregivers can use a variety of tools, including their tone of voice, body language, facial expression and even shifting their emotional state in order to better hear and listen to people with dementia. 

Here’s how caregivers can improve communication with family members living with dementia.

Dementia and language: What to know

Alzheimer's disease and other forms of dementia typically affect language in two ways: expressive aphasia (difficulty speaking to express thoughts) and receptive aphasia (difficulty understanding words spoken to them). Both types can progress at different rates, making communication a challenge.  Generally, with Alzheimer’s disease, the first loss noticed is the use of pronouns (he/she/him/her, they/them, etc.), then nouns (words for persons, places, things), then verbs and adverbs (action and descriptive words), and eventually, the person may only use single short phrases and one-word responses. There’s a table below for a more detailed description of the communication challenges based on stages of dementia. 

It’s important to keep in mind that people living with even earlier stages of dementia may no longer be able to discern the more subtle patterns of language that you are used to using with them. They may no longer be able to tell when you are kidding or teasing them and may be much more literal in their interpretations of your words than before. Simplify your language, use fewer words, and pause more to clarify whether they have understood you. Give the person time to absorb, process, and formulate their own response to what you are saying. This is a demanding task, so you’ll want to be empathetic with yourself and your loved one as you communicate.

How to communicate with a person living with dementia

It’s always good to remember to be patient and communicate in a quiet place without distractions. Also, make sure you are giving them time to express themselves in the best way they can; don’t rush in to guess what they are trying to say until you have really listened and observed. Look at their body language and nonverbal cues (how are they holding their body posture? How are they gesturing with their hands? What do their eyes tell you?). Sometimes, when you really listen, and because you know them well, you may actually be able to understand their “language”, the sounds, the tone, and or the meaning, even if the words don’t make any sense. 

To effectively communicate with individuals with dementia, it’s crucial to simplify your language and be clear. Avoid using complex sentences or abstract concepts. Instead, use short, direct sentences and give the person time to respond. It’s important to make eye contact and ensure you have their full attention before speaking. Be patient, as it may take longer for them to process information and formulate a response.

When communicating with someone with more advanced dementia, listen to the words they are using. It may seem like random "word salad" at first, but if you listen closely enough, some of the words may give hints about the essence of what they are trying to communicate. Use your knowledge of their history, background, preferences, and priorities to make more sense of their jumbled speech. Even if it seems like they are having difficulty finding the right words, paying attention to what they are saying may provide clues.

Non-verbal, facial, and body language communication with a person with dementia 

Non-verbal communication is essential when interacting with a person with dementia. Pay attention to their body language, facial expressions, and tone of voice. These non-verbal cues can provide insight into their emotional state and intentions. Use positive facial expressions, gentle touch, and maintain eye contact to show empathy and understanding. Being mindful of your own body language can also help reinforce verbal communication and make the interaction more meaningful.

If they are smiling or seem happy when speaking to you, try to respond with general affirmative positive statements such as, “That’s great,” or “You don’t say? – Thank you for sharing that with me.” If they appear upset or in distress, you might respond with, “Oh I’m sorry. You seem upset. Let’s see what I can do.” These approaches let them know you are connecting with them emotionally.

‘Bad Days’ and memory loss

People with dementia experience 'good days' and 'bad days.' On bad days, memory loss and cognitive impairment can be more pronounced, making communication particularly challenging. During these times, it's essential to be even more patient and understanding. Avoid correcting or arguing with the person, as this can increase their frustration. Instead, acknowledge their feelings and provide reassurance. For example, if they appear upset, you might say, “Oh I’m sorry. You seem upset. Let’s see what I can do.” Remember, their difficulty finding the right word or staying on topic is a symptom of their condition, not a reflection of their character. 

Talking to a person with dementia—stages of communication

Communication needs change as dementia progresses through its stages:

Stages of dementia and language difficulties

• Early dementia--Some difficulty concentrating and following conversation; difficulty finding the right words when speaking or writing; losing train of thought when speaking; repeating oneself. Usually, the person with dementia is aware of these problems and may try to hide or overcompensate for them.  
• Moderate or mid-stage dementia--Difficulty following along with group and one-on-one conversations; losing train of thought when speaking; increased difficulty finding the right words when speaking or writing; loss of vocabulary, substituting words that sound the same or inventing new words; difficulty following directions; poor recall when telling others about recent events; increased use of gestures to communicate.  
• Severe or late-stage dementia--Inability to follow along with anything other than simple conversations and instructions; increased loss of vocabulary, including personal information and loved ones' names; tendency to talk about nothing, rambling, or tangential speech (streaming and nonsensical).  
• End-stage dementia--Inability to speak language or otherwise respond with words at all; may babble or use sounds to communicate, difficulty or inability to understand when spoken to. May still respond to song and communication when paired with music.  

By adapting your communication approach, you can maintain a meaningful connection with a person with dementia, despite the challenges. Using these strategies can help reduce frustration and improve the quality of interactions for both caregivers and individuals with dementia.