Support for Alzheimer's and Dementia Caregivers

The Alzheimer’s care journey

The challenges and rewards of Alzheimer’s care

Caring for a person with Alzheimer’s disease is often a series of grief experiences as you watch memories disappear and skills erode. Initially, this process can go unnoticed until difficulties impact more areas of daily life and the disease can no longer be denied. For both caretakers and their loved ones, this often produces an emotional wallop of confusion, anger and sadness. If left unchecked, these feelings can last throughout a caregiver’s long journey.

Exploring common Alzheimer’s experiences can shift your perspective and show you that you are not alone. For many, Alzheimer’s care includes not only challenges, but also many rich rewards:

Caring for Someone with Alzheimer’s
Challenges:	Rewards:
Overwhelming emotions as capabilities lessen	Bonds deepen through care, companionship, and service
Fatigue and exhaustion as caregiving demands increase	Problem solving and relationship skills grow through experience
Isolation and loneliness as independence disappears	New relationships form through education and support
Financial and work complications as costs rise and resources are challenged	Unexpected rewards develop through compassion and acceptance

Preparing for the Alzheimer’s care experience

Providing care for a person with Alzheimer’s disease is sometimes described as the reverse of raising a child. You can support and nourish your loved one’s independence and stability, but cognitive and physical regression will ultimately require 24-hour care. Although medical advances can slow early stage decline, Alzheimer’s remains a terminal disease.

With this difficult outlook, caregiving can become all-consuming as your loved one diminishes over a period of years. Grief, depression, and anger are common, but anticipating and learning about the disease can reduce your frustration, foster reasonable expectations, and prepare you for new challenges.

Your commitment to Alzheimer’s caregiving is a remarkable gift. Learning all you can about what is happening and what to expect not only helps your loved one, but it is also the first step towards protecting your own total health.

Planning support for Alzheimer’s caregivers

Balancing the enormous task of caring for a cognitively impaired adult with your other responsibilities requires skill, attention, and diligent planning. Fortunately, many professionals and caregivers have developed a wealth of resources to help you prioritize your efforts and provide effective care (see the Related Articles below).

Planning for your own care is also vitally important. It is easy to abandon the other people and activities you love when you’re mired in caregiving, but you risk your health and peace of mind by doing so. Though your caregiver’s journey is full of the unexpected, learning to protect, reflect, and connect can reveal surprising opportunities to meet your needs and nurture your sense of satisfaction.

Protecting yourself from burnout during Alzheimer’s care

From the first acknowledgement of mental changes to your loved one’s ultimate death, you are likely to experience a changing constellation of emotions, mind-numbing exhaustion, and altered relationships for a number of years.

Because caregiving is such hard work, you must learn to protect yourself first. These simple strategies will fit into your most demanding days and can energize you against the pitfalls of excessive stress:

• Schedule mini-workouts throughout the day. Regular exercise not only keeps you fit, it releases endorphins that keep you happy. Ten minute sessions sprinkled over the course of the day are easier to block out than an hour away. Take a walk or jog outside, dance to your favorite music, work out to an exercise DVD, or cycle to the store.
• Take time to play. In the early stages of Alzheimer’s disease, include your loved one in short walks, board games, or jigsaw puzzles. Join an online scrabble tournament, practice your golf swing, or play with a pet. A daily dose of fun is good medicine, and doesn’t require money, a car, or huge blocks of time.
• Try something new. Challenge yourself to learn a new skill while you are “on the job.” Order a self-paced foreign language program or try an exercise video game. From tennis to golf to pitching a strike, so-called “exergames” offer living room-friendly activities for every age and skill level. With just a few minutes of practice each day, you can flex mental muscle and relieve harmful stress.
• See the funny side. Humor is a well-known antidote to stress, sadness, illness, and boredom. Give yourself permission to chuckle at the absurdities you and your loved one experience, and surround yourself with laughter. Avoid heavy dramas at the video store and go for a hearty belly laugh. Your infectious good mood will replenish your inner resources and sooth your loved one.
• Ask for help. For someone who is used to operating independently, the realities of caring for someone with Alzheimer’s disease can be a real eye-opener. Those with strong support systems, creative respite arrangements, and regular time away not only fare better, they also find more satisfaction in their caretaking roles. Join a support group, schedule frequent breaks, and seek professional help if you recognize you're exhibiting any warning signs of caregiver burnout.

Making time for reflection during Alzheimer’s care

Reflecting and thinking clearly while someone you love slowly disappears is tough, but this emotionally charged experience also brings tremendous opportunity for growth, satisfaction, and love. By accepting each new reality and learning to hush your inner chatter, you can make conscious choices that promote happiness and improve quality of life.

Habits of thought and perception can create endless mental dialogues of “what ifs,” “why nots,” and “how could she's!” Consider these tips to silence negative voices and build reflective caregiving skills:

• Keep a daily journal to record and reflect on your experiences. By journaling your thoughts, you can mourn losses, celebrate successes, and look for those thought patterns that keep you from acting in the present.

• Count your blessings. A daily gratitude list can chase away the blues and let you focus on your loved one’s capabilities.
• Practice relaxation techniques. Relaxation techniques such as meditation, deep breathing, visualization, mindfulness, yoga, or rhythmic exercise can calm, restore, and promote happiness. Experiment with different techniques to find the ones that work best for you.
• Improve emotional awareness. Remaining engaged, focused, and calm in the midst of such tremendous responsibility can challenge even the most capable caregivers. By developing your emotional awareness skills, however, you can relieve stress, experience positive emotions, and bring new peace and clarity to your caretaking role.

Keeping the connections going during Alzheimer’s care

When you approach an Alzheimer’s patient with respect while forgiving the past and celebrating the present, you’re more likely to have a positive encounter. Even if your history with the patient prevents you from connecting with a sense of love, exploring and encouraging connections can still create opportunities for untold joy.

In general, as interpersonal connections become more difficult and opportunities to interact are limited, difficult behaviors increase. These reminders will help you find common ground:

Connecting Through Change

Celebrate what is possible. Your loved one still has many abilities. Structure activities to invite participation on whatever level is possible, and you will both find real enjoyment. Understand the challenge. Difficult behaviors usually result from confusion, disorientation, and frustration. Avoid blame, follow the path of least resistance, and let go of unfulfilled expectations. Try to envision his world. Imagine not being able to remember and do life’s simple tasks. By valuing what your loved one is able to give, you can find satisfaction on even the toughest days. Authenticate and motivate. By experimenting and observing, create a Top 20 list of your loved one’s favorite activities and experiences that bring comfort and joy. Share them with other friends and family.

Connecting Through Change
Celebrate what is possible. Your loved one still has many abilities. Structure activities to invite participation on whatever level is possible, and you will both find real enjoyment.
Understand the challenge. Difficult behaviors usually result from confusion, disorientation, and frustration. Avoid blame, follow the path of least resistance, and let go of unfulfilled expectations.
Try to envision his world. Imagine not being able to remember and do life’s simple tasks. By valuing what your loved one is able to give, you can find satisfaction on even the toughest days.
Authenticate and motivate. By experimenting and observing, create a Top 20 list of your loved one’s favorite activities and experiences that bring comfort and joy. Share them with other friends and family.

Connect through nonverbal communication

Language skills are impacted early in Alzheimer’s disease. Encouraging personal histories, prompting your loved one to share his or her moments of greatness, and speaking in a calm, loving, and simple (but adult) manner will facilitate your interactions during the early years.

Remember the adage “Your actions speak louder than words?” In spoken communication, most of the meaning comes from tone, gestures, and other forms of body language.

With Alzheimer’s disease, nonverbal skills become all-important as words fade. Even in the late stages of the disease, patients communicate a great deal through eye contact, gestures, looks, body posture, nods, facial expression, and breathing patterns, and can still respond to others.

Building nonverbal skills can maintain your relationship, improve your interactions, and foster a sense of well-being for you and your loved one.

Connect through sensory-rich shared experience

Creating an environment that is safe, soothing, and certain enables you to connect with your loved one. Following these tips can help you bridge a connection as your relationship evolves:

• Limit surprises by maintaining routines. While an Alzheimer’s patient struggles to maintain a sense of self and meaning, establishing daily routines will provide needed reassurance. Include favorite activities each day and schedule more challenging tasks when your care recipient is at her peak.

• Create a memory-rich environment. Surround your loved one with reminders of happy, successful moments. As the present recedes into the past, providing pictures from earlier years will stimulate conversation. Placing reminders from favorite activities will help both of you remember and celebrate capabilities.

• Share enriching sensory experiences. Music, fragrance, texture, and taste can both calm and energize Alzheimer’s patients—some sensory input can also agitate patients. Watch for reactions and adapt the environment to maximize sensory pleasure.

Connect to others

When caregiving is difficult and overwhelming, you may feel totally alone. However, you’ll find there are many others in your area who are also providing care to someone with Alzheimer’s disease or other dementia. It can help to reach out to others who understand the challenges you’re facing.

Maintaining social contacts, family connections, professional networks, and peer support is an important safeguard for your wellness and happiness. Sharing tasks, solving problems, and savoring the humor along your caretaking journey will let you return to a life filled with good health and cherished memories.

Authors: Melissa S. Wayne, M.A. and Jeanne Segal, Ph.D. Last updated: April 2013.