Dementia Caregivers Toolbox

Family caregivers of those with Alzheimer’s or other forms of dementia/memory impairment face an extraordinary challenge when it comes to providing care. There’s a big learning curve, and you need all the help you can get. Fortunately, a lot of outstanding resources are available. This Dementia Caregivers Toolbox gathers a few of those tips and resources into one place so you can start finding the support and information you need.

What is Dementia?

First, it’s important that dementia caregivers understand dementia. Dementia isn’t a single disease. It’s an umbrella term describing a decline in cognitive function that surpasses normal aging. Dementia affects memory, reasoning, and other mental abilities, often altering personality and disrupting daily life. Above all, it’s important to remember that the person with dementia has “broken perception” – that is, they are unable to correctly perceive and interpret stimuli around them nor respond to them as they might have in the past.  It’s important to note that, as many caregivers feel that the “odd behaviors” are personal responses to them, while they are, in fact, a manifestation of the disease.

Types of Dementia

There are several types of dementia, each with distinct causes and characteristics:

Alzheimer’s Disease

The most common type (accounting for about 60 to 80% of diagnosed dementias), primarily impacting memory, learning and language. The leading cause of Alzheimer’s disease is the abnormal build-up of proteins, specifically amyloid and tau, in and around brain cells, leading to the formation of plaques and tangles that disrupt neural communication and cause brain cell death. There is increasing dysfunction as the disease progresses. It is a terminal illness and, generally, lasts 7 to 12 years post diagnosis—though some individuals live as long as 20 years.

Vascular Dementia

Caused by brain blood vessel issues. Vascular dementia often initially presents problems in planning, organizing, decision-making, and problem-solving, though the person with dementia can seem very “normal” in some areas of response and function. Vascular dementia tends to cause more prominent problems with attention, processing speed, and executive function early on. Depression is common with vascular dementia and should be detected and treated early on, as untreated depression can hasten cognitive decline.

Lewy Body Dementia

Involves abnormal protein deposits affecting cognition and movement. The most common symptoms include severe visual and auditory hallucinations, fluctuations in alertness and cognition, Parkinsonian motor symptoms (like tremors and stiffness), frequent falls, REM sleep behavior disorder, and problems with mental abilities such as attention, planning, and visual-spatial perception. Agitation is often an issue with those who have Lewy body dementia; there are few medications that are found to be helpful in treating this type of dementia.

Frontotemporal Dementia (FTD)

In this type of dementia, the frontal and temporal lobes of the brain shrink (atrophy) over time, leading to the characteristic symptoms of FTD: a change in personality and behavior. FTD often presents earlier than Alzheimer’s disease, between ages 40 and 60. Alzheimer’s disease usually presents after age 65. This type of dementia is characterized by an absence of “conscience,” lack of safety awareness, and impulsive behaviors. These individuals are often young when diagnosed and physically strong; finding the best care for them can be challenging.

Primary Progressive Aphasia (PPA)

PPA typically begins with subtle language problems that worsen over time, eventually leading to significant difficulties with speaking, writing, reading, and comprehending language. Initial symptoms often include trouble finding words, speaking hesitantly, or having difficulty understanding complex sentences. PPA results from deterioration of brain tissue in areas responsible for speech and language. It is caused by neurodegenerative diseases, most commonly Alzheimer’s disease or frontotemporal lobar degeneration.

Mixed dementia

A combination of multiple dementia types. The most common types are a combination of Alzheimer’s disease and Vascular Dementia, though others may co-occur as well. Most brain and cognitive changes are typically diagnosed as one form of dementia, but recent studies have shown that mixed dementia is more common than previously thought. Mixed dementia, sometimes known as multiple-etiology dementia, is a condition where brain changes are caused by more than one neurological disease, such as Alzheimer’s disease, Lewy body dementia, or frontotemporal dementia.

Recognizing Dementia Symptoms

Regardless of the type of dementia a loved one may have, there are universal signs to watch for.

Cognitive Symptoms

• Memory loss, especially for recent events
• Difficulty concentrating and problem-solving
• Confusion about time or place
• Trouble with planning and organizing
• Language problems, such as difficulty finding words

Behavioral and Mood Changes

• Personality changes
• Depression or anxiety
• Apathy and loss of interest in activities
• Mood swings and irritability
• Poor judgment and decision-making

Functional Impairments

• Difficulty performing familiar tasks
• Problems managing finances
• Misplacing items frequently
• Getting lost in familiar places

Physical Symptoms

• Changes in gait or balance
• Difficulty with coordination
• Visual perception problems

Early Diagnosis

Early diagnosis is essential, as it can provide better treatment access and allow more time to plan and arrange support. Additionally, some treatments may help slow cognitive decline if initiated early. Symptom-control medications, like Memantine and Donepezil, for example, may help address the symptoms of functional and cognitive decline if started early enough in the disease process.

Helpful Tips for Dementia Caregivers

Here are some practical strategies to support both you and your loved one while navigating the challenges of dementia caregiving.

Communicating with your loved one

When caring for your loved one, a simple smile may be all it takes to reduce the chance of challenging behaviors. People with dementia can often be reassured by non-verbal communication. Your warm smile and eye contact convey you are happy to be with them. Here are some tips to help you successfully communicate with your loved one:

• Make eye contact
• Use hands and touch to help guide
• Pay attention to body language – yours and your loved one’s
• Use their name frequently
• Tell them what you’ll do before you do it
• Ask permission
• Speak slowly – and clearly
• Speak in short sentences
• Ask one question at a time and provide options for answering
• Don’t ask them if they “remember” – instead, say, “We had such a wonderful time in Sicily.”
• Validate their feelings
• Join them wherever they may be – even if the memories are not factual
• Change direction or activity if they become agitated
• Don’t correct or argue
• Avoid upsetting topics
• Respect their dignity – don’t say diapers, say “briefs” or “Depends.”
• Don’t talk about them as though they aren’t there
• Focus on capabilities and assets, not limitations

A Tip About Communicating

Remember to address them at eye level.  Depth perception and peripheral vision decrease as the disease progresses, so be sure to stay within their “dashboard” (kind of like the cockpit of an airplane where everything is right in front of the pilot).  Approach from the front, say their name, take their hand and, then, communicate.  This helps avoid startling the person and setting off a cascade of neurotransmitters that may result in agitating them.

Home Safety

It is important to create a living environment that reduces hazards while supporting independence. Install grab bars and railings in essential areas to help prevent falls. Secure cabinets containing hazardous items with locks. Utilize technology such as motion sensor lights and appliances with automatic shut-off features. Keep pathways free of clutter to allow safe movement around the home.

Start Building a Support Network

A lesson from dementia Caregiving 101: Caregiving alone is nearly impossible. From normal household activities like cooking, cleaning, and running errands to care-related help like transportation to medical appointments, assistance with dressing, or medication management, there are plenty of ways people can make caregiving a little easier. Talk with family, friends, or volunteers, and recruit a network that can support you and your loved one in this journey.

Create an Emergency Contact List

Whether you’re caring for your loved one at home or they’re in a memory care community, be prepared for the unexpected by having an emergency contact list. Have the number for a designated “go-to” person who can be there on short notice. Also include phone numbers for family members who might need to be notified, your loved one’s medical provider, insurance provider, pharmacy, and any additional caregiving services you might use. Keep the list on your phone, print a copy, and post it in a prominent place at home.

Develop a Routine

Routines are reassuring. If you can, stay close to former routines—morning showers- if that’s been a lifelong habit. Within reason, a little flexibility and spontaneity can be fun, but be as regular as possible with meals and bedtime.

Daily Stimulation

The effects of movement on mood and sleep are strong. Build exercise into every day, even if it’s just walking around the house. Exposure to daylight can also help with sleep. You don’t have to play cruise director—but you may find that adding stimulating activities into the day takes less effort than dealing with problematic behaviors they can help you avoid.

Pack a “Go” Bag

Having overnight bags ready for you and your loved one will make any unexpected hospital visits more comfortable. Include water bottles, nonperishable snacks, tissues, a blanket and travel pillow, headphones, a phone charger, a change of clothes, and something familiar like a comfort toy or photos of family members.

Organize Medical Information

If you haven’t done so, consolidate and organize your loved one’s medical information. Paperwork, prescriptions, appointments, multiple doctors, insurance communication can become overwhelming if you don’t find a way to organize it all. If that’s not your strong suit, ask one of your support folks to help you figure out a system that works for you.

Schedule Respite Time

You can’t take care of someone else if you don’t take care of yourself. Put some self-care time on the calendar, even if it’s just for a few minutes each day. You can also explore respite stay options at senior living communities near you so you can have a few days without being a caregiver.

Support Groups

Dementia caregivers must have people to talk with who understand what they’re going through. Support groups for caregivers of dementia patients are a healthy way to share feelings and experiences in a nonjudgmental environment. In addition to checking for support groups through your house of worship and community-based senior services organizations, here are a few other support resources to explore:

Alzheimer’s Association – Search for a local chapter. Virtual groups are also available.

ALZConnected  is a free online community run by the Alzheimer’s Association where caregivers can connect with others, ask questions, and share experiences.

Alzheimer’s Foundation of America (AFA) Support Groups offer free support groups facilitated by licensed social workers trained in dementia care. Available via Zoom or phone.

Facebook Support Groups – A popular group to check out:  Dementia Caregivers Support Chat Group is a large online community with over 9,000 members.

Hope Health Dementia Caregiver Support Group hosts virtual support groups via Zoom five days a week for dementia caregivers.

Local Area Agencies on Aging offer in-person support groups for dementia caregivers. Contacting your local Area Agency on Aging can help you find groups in your community.

Memory People is another Facebook support group for Alzheimer’s and dementia caregivers, as well as those with early-stage dementia.

Dementia Caregiving Books

From practical care advice to emotional support and understanding the experience of dementia, here are some top-rated books for dementia caregivers.

“The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer’s Disease, Other Dementias, and Memory Loss” by Nancy L. Mace and Peter V. Rabins. Often referred to as the “gold standard” book for dementia caregivers, providing practical tips and comprehensive information.

“Learning to Speak Alzheimer’s: A Groundbreaking Approach for Everyone Dealing with the Disease” by Joanne Koenig Coste. Offers a practical approach to the emotional well-being of both patients and caregivers.

“Creating Moments of Joy Along the Alzheimer’s Journey” by Jolene Brackey. It focuses on celebrating what remains rather than dwelling on losses, with sections for journaling.

“The Caregiver’s Guide to Dementia: Using Activities and Other Strategies to Prevent, Reduce and Manage Behavioral Symptoms” by Laura Gitlin and Catherine Verrier Piersol. Examines strategies to prevent, reduce, and manage behavioral symptoms using activities.

“Still Alice” by Lisa Genova. A novel providing insight into the experience of living with early-onset Alzheimer’s disease, highly recommended by dementia care experts.

“Loving Someone Who Has Dementia: How to Find Hope while Coping with Stress and Grief” by Pauline Boss. Focuses on the caregiver’s emotional journey and offers coping strategies.

Online Resources

Alzheimer’s Association – Plenty of articles, videos, research and support.

National Institute on Aging – This Alzheimer’s and related dementia caregiving page offers helpful information.

Caregiver Action Network – A general resource page for caregivers, it also has information for those caring for someone with dementia.

Family Caregiver Alliance – The Dementia Caregiver Resources provides guides, tip sheets, and caregiver stories to help navigate the dementia caregiving journey.

Cleveland Clinic Healthy Brain Initiative – offers brain health assessment tools, lifestyle tips, and the latest research information.

Dementia Careblazers – Developed by a board-certified geropsychologist, this site includes online resources, a survival guide, blogs, and videos for real-life caregiver support.

Caregiver Burnout Quiz – Caregiver burnout can have serious consequences for you and those you care for. Take our caregiver burnout quiz to see if you are experiencing symptoms.

Articles & Videos

These resources offer practical tips, expert advice, and foundational knowledge to support dementia caregivers in their challenging roles.

Handling Dementia-related Behaviors

Transitioning to Memory Care

10 Real-life Strategies for Dementia Caregiving

How to Help Alzheimer’s Patients Enjoy Life, Not Just ‘Fade Away’

The Most Important Dementia Care Video of 2023

Teepa Snow’s Positive Approach to Care

Caregiver Tactics (video series)

Technology that Makes Life Easier for Caregivers

Carely helps you streamline and organize caregiving duties by connecting you to your care network.

Lotsa Helping Hands is an easy-to-use private group calendar designed to help caregivers and family members coordinate a loved one’s care.

Insight Timer is a meditation app with the world’s largest free library of more than 190k guided meditations from 17k teachers. It helps you master meditation techniques to help manage anxiety and stress, increase mindfulness, and improve sleep.

Medisafe is an app that can make medication management less challenging by sending personalized reminders and alerts for daily medication.

It’s Done! features an easy-to-use interface with 40 daily tasks to help dementia patients remember their to-dos — from taking medications and eating meals to locking the door and turning off the stove.

Nymbl Training offers balance training tools, fall risk assessments, digital balance screenings, and other resources to improve balance, prevent falls, and improve independence.

Iridis is an app that gives tips and tricks to reorganize a home for dementia patients’ ultimate comfort and safety — things like lighting adjustments, noise reduction, color palettes, furnishings, and more.

MindMate features include brain-training games, a daily planner, workout plans, instructional videos, and a library with thousands of articles.

Luminosity is a brain training app designed to enhance cognitive abilities through various games and exercises, making it a great (and fun!) tool for people with dementia.

SingFit is an award-winning therapeutic music app designed to help improve the health and mood of patients with cognitive decline through music-based activities.

Remember, You Are Not Alone

No matter where you’re in your caregiving journey, you’re not alone. There are resources and support for your whole family as you consider memory care choices for your loved one.

Find Community

Our Locator Tool can help you find a local senior living community with respite and memory care.

Where You Live Matters

Where You Live Matters is powered by the American Seniors Housing Association (ASHA), a respected voice in the senior housing industry. ASHA primarily focuses on legislative and regulatory advocacy, research, educational opportunities, and networking for senior living executives, so they can better understand the needs of older adults across the country.

_{Originally Published: February 26, 2019 – Updated On: September 3, 2024}