Practicing Compassion: How To Care For Someone With Dementia

In general, dementia isn’t a single disorder, but a set of symptoms present in many conditions that cause damage to the brain’s structure and function, such as the following:

• Alzheimer’s disease
• Lewy body dementia
• Vascular dementia
• Frontotemporal dementia
• Mixed dementia

According to The World Health Organization (WHO), an estimated 55 million people have dementia, and 10 million new cases emerge globally every year.

Individuals with dementia may experience impaired memory, confusion, diminished cognitive and executive function, and significant changes in behavior and mood. Symptoms typically emerge in late adulthood (65 years and older) but may present as early as one’s 30s in cases of early-onset dementia. 

Dementia can be seen as a chronic, degenerative condition, and people with dementia often require round-the-clock care as the disease progresses. This can become overwhelming for caregivers if they don’t seek support from healthcare professionals, structure a care plan, and take care of their own needs. It can be beneficial for caregivers to make time for regular therapy sessions to maintain their mental health.

Dementia symptoms 

Symptoms of dementia typically present in different ways according to which area of the brain is affected. Although the emergence of symptoms often varies between people, most experience cognitive, behavioral, and physical symptoms that worsen as dementia progresses. 

Individuals may face challenges attending to their daily responsibilities and eventually lose their independence when they can no longer drive safely or travel alone. During the final stages, people with dementia are often unable to communicate and care for themselves as their bodies deteriorate.

Cognitive symptoms of dementia 

These symptoms typically impair an individual’s executive function. For example, they may have a diminished ability to plan, organize, multitask, and manage time. Common cognitive symptoms of dementia include the following:

• Memory loss: Forgetting information they would typically remember, such as names, important dates, and/or recently learned information 
• Confusion: Challenges with recognizing dates, times, familiar locations, or seasons
• Problems with logical reasoning: Compromised ability to solve problems and complete everyday tasks
• Disorientation: Forgetting where they are or how they got there
• Problems with language and communication: Trouble following a conversation or choosing the right words
• Frequently losing or misplacing things: Regularly losing things, leaving items behind, or returning them in unusual places
• Difficulty concentrating: Challenges remaining focused when completing a task, holding a conversation, or watching a movie

Behavioral and psychological symptoms 

People with dementia often have noticeable changes in mood and behavior, such as those discussed below:

• Irrational anger and irritability: Uncharacteristic lashing out, pacing, or agitated gestures
• Physical or verbal aggression: Making verbal threats, damaging property, or engaging in physical violence
• Repetitive movements or speech: Repeating questions, checking and rechecking the lights, repetitive tapping
• Increased difficulty coping with new situations or challenges: Overwhelm when faced with public spaces, frustration with completing a task requiring more complex cognitive skills
• Withdrawal from social situations and relationships: Isolating themselves from friends and family, canceling appointments or obligations
• Diminished affect and expression of emotion: Blank facial expression, lack of body language
• Wandering: Getting lost in familiar places, like the grocery store or the neighborhood where they live
• Poor judgment: Dressing inappropriately for the weather, giving money to strangers
• Impulsive or inappropriate behaviors: Rude or hurtful comments, inappropriate sexual behavior or speech

Physical manifestations of dementia

In the later stages of dementia, individuals might have trouble eating and swallowing, walking, standing, sitting, balancing, and displaying coordination. People may also experience stiff muscles, tremors, or incontinence. 

Caring for someone with dementia or Alzheimer’s disease

The Centers for Disease Control and Prevention (CDC) reports that each year, more than 16 million people provide more than 17 billion hours of care for family and friends with dementia in the US. 

Taking care of a loved one with dementia can be a challenging and emotional experience. It often requires education, lifestyle changes, and support from friends and family members to maintain the individual’s safety, quality of life, and independence for as long as possible. 

Because symptoms tend to be far-reaching and often affect all aspects of an individual’s life, caring for someone with dementia may require a multifaceted approach. 

How to care for someone with dementia: Practical tips and strategies for providing home care

There are some foundational things you can do to help your loved one stay active, alert, and independent for as long as possible. For example, maintaining a regular routine for eating, bathing, dressing, and engaging in recreational activities can be helpful.

Try to keep your loved one safely and appropriately involved in responsibilities like scheduling appointments, paying bills, and caring for the home. Tools like calendars, notebooks, to-do lists, and timers can serve as reminders. Consider using visual cues like sticky notes around the house to help them remember important tasks. 

Providing home care and helping with personal care tasks

Creating a safe and comfortable environment is typically the priority when caring for someone with dementia at home. 

This might mean implementing safety features like grab bars, safety plugs, and latches on cabinets. Eliminate safety concerns, such as fall hazards like loose carpeting or cords, and secure potential hazards like matches or household chemicals. 

People with dementia might need help with personal care tasks, such as bathing, dressing, and grooming, as the condition progresses. Encourage your loved one to do as much as possible on their own. 

Proper nutrition, hydration, and physical activity can help your loved one remain alert and active and manage symptoms more effectively. 

People with dementia often struggle with maintaining a regular sleep schedule; however, getting enough sleep can be highly beneficial for better overall health. 

Strategies to help them stay active, nourished, and rested might include the following:

• Engage them in activities like gardening, cooking, chores, and exercise that are appropriate for their abilities.
• Play music while completing such tasks (if they don’t find it overwhelming) to help them stay motivated and encourage more movement. 
• Participate in physical activities with your loved one, such as dancing or taking walks together.
• Remember that your loved one may require rest and try to moderate their activity to prevent them becoming overwhelmed and frustrated. Consider scheduling activities with time limits in mind.  
• Prepare nutritious foods and offer them choices for what they’d like to eat. 
• Avoid caffeine, cigarettes, and alcohol. 
• Encourage them to practice good sleep hygiene by keeping a bedtime routine that signals that it’s time to go to sleep. For example, you may have them change into bedclothes, brush their teeth, and use the bathroom at the same time each night before bedtime. You may also offer a warm decaffeinated drink or use calming music to encourage relaxation. 
• Ensure their environment is conducive to sleepiness by keeping it quiet, comfortably cool, and as dark as possible without causing distress. If they have trouble with or are afraid of waking in the night, use a nightlight to avoid disorientation.

Remember to consult your loved one’s physician when developing eating habits, exercise, and a sleeping plan. They can help you care for your loved one’s physical health safely and effectively by recommending lifestyle changes that fit their specific needs. 

Managing health care and comorbidities

Individuals with dementia may require assistance with their medical needs. You might help them by keeping track of their medications and dosage schedule. Monitor them for potential side effects and make sure they attend regular medical check-ups and screenings.  

Additionally, dementia-related conditions often come with medical comorbidities, such as hypertension, diabetes, stroke, hearing loss, and vision impairment. Managing these types of comorbidities can be an essential part of ensuring your loved one is safe and adequately cared for. In some cases, this may reduce related dementia symptoms. For example, research suggests that high-risk individuals who use a hearing aid may slow their rate of cognitive decline by nearly 50% compared to those who don’t. 

Be sure to stay in close communication with your loved one’s healthcare providers about any changes in symptoms or behaviors.

Promote social and cognitive stimulation

Comprehensive, structured programs like cognitive stimulation therapy (CST) are also available to support individuals with dementia and the people who care for them. CST is a comprehensive form of treatment primarily designed to help dementia patients stay active in a therapeutic setting with a set number of themed weekly group sessions that stimulate cognition and social interaction. These sessions are typically facilitated by healthcare professionals experienced in working with people with dementia-related disorders. 

Emotional support for people with dementia

People with dementia may require extra support to manage the complex emotions that can accompany symptoms. While it may require extra patience and communication skills, emotional support tends to be an integral part of cultivating overall safety and well-being for individuals with dementia. Here are a few tips for providing emotional support for your loved one.

Communicate effectively

Effective communication can be a key component of emotional wellness in individuals with dementia. Speak clearly and calmly in simple sentences, but try to avoid speaking to your loved one as you would to a child. Engage them in a conversational way and include them in conversations with others. 

A large part of effective communication usually involves active listening. This may require pacing your conversations more slowly so your loved one can process the information and respond. Also, try to avoid “cutting them off” in the middle of a sentence in anticipation of what they will say.

Provide validation and reassurance

People with dementia sometimes express concerns and fears about issues that might not seem “normal,” but that doesn’t diminish their emotional impact. Try not to dismiss them if they express worry. Instead, communicate that you understand how they’re feeling and you’re there to support them. 

Encourage personal autonomy through meaning and purpose

Some people with dementia struggle with a sense of uselessness and lack of purpose. Asking for their involvement, help, and advice can contribute to overall well-being and self-esteem. 

Engage in physical touch

Gentle physical interaction can provide reassurance to your loved one.  For example, offer hugs, hold their hand, or touch their arm, back, or shoulder during conversations. 

Self-care strategies when coping with how to care for someone with dementia

Whether it's coping with problematic behaviors, supporting your loved one emotionally, or managing their affairs, you may sometimes become physically and emotionally drained as you care for your loved one. Making time to care for your mental and physical health can help you cope with those challenges. Here are some suggestions for ways you can attend to your own needs while providing care for your loved one:

• Set aside time for relaxation and personal activities you enjoy.
• Prioritize your physical health through proper nutrition, exercise, and adequate sleep.
• Practice mindfulness and stress reduction techniques.
• Seek social support from other family members, friends, or support groups for caregivers.
• Attend therapy to maintain overall mental health.
• Set realistic expectations for yourself, acknowledge your limitations, and practice self-compassion.
• Find local resources for caregivers and loved ones with dementia through organizations like Alzheimers.gov, The Alzheimer’s Foundation of America, and The National Institute on Aging. 

Caring for a loved one with dementia often requires resilience

Speak to a therapist about coping strategies

Seeking mental health support as a caregiver of someone with Alzheimer’s disease or dementia

While cognitive behavioral therapy (CBT) is among the most effective strategies that caregivers can use to manage burnout and overwhelm, there are some potential obstacles associated with caregiving that can make it difficult for people to get the help they deserve. 

For example, caregiving can tax one’s schedule and monetary resources, leaving little time for attending appointments and raising concerns about the affordability of therapy. Some individuals might face challenges commuting to and from in-office appointments or finding counselors nearby who are experienced in addressing the unique needs of caregivers. 

For many caregivers, virtual therapy is a convenient, affordable, and effective alternative to conventional therapy. 

Benefits of online mental health care

Online therapy platforms can offer individuals greater scheduling flexibility and access to a broader scope of mental health professionals while eliminating geographical barriers to treatment. Additionally, it is often more affordable than traditional in-office therapy without insurance coverage.