Caregiver Wisdom | Alzheimer's Prevention Registry

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September 10, 2015

Caregiver Wisdom

By Alzheimer's Prevention Bulletin

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Becoming a caregiver for someone with dementia demands learning a new way to be with that person. At some point most caregivers encounter challenges resulting from the disease. This can be a difficult time in the caregiving experience. Many caregivers learn effective strategies and techniques to address these obstacles. The knowledge and expertise of implementing successful strategies and adaptations result in CAREGIVER WISDOM.

The iconic late night television host, David Letterman, developed a top ten list, highlighting specific topics followed by suggestions and responses to the subject. With that model in mind and with the permission of real life caregivers attending various support groups at Banner Alzheimer's Institute, we proudly present CAREGIVER WISDOM: THE TOP FOUR CAREGIVER CHALLENGES AND HELPFUL SOLUTIONS.

These suggestions and ideas are from the REAL experts: the family member, friend, partner, adult child, or spouse who are caring for and loving the person with dementia every day.

Before we begin, a disclaimer: There is never one single solution to any caregiving challenge. The hope is that the following ideas and options will be helpful in allowing you to tailor a plan by providing strategies to address the challenges you face.

CAREGIVER CHALLENGE #4: Lack of knowledge and understanding of the dementia process and its progression.

Dementia affects more than just memory. It affects how the brain sees the world and how the person perceives reality. This can result in challenging behaviors, changes in the person's personality and emotions, and an inability for the person with dementia to recognize and appreciate how much you, the caregiver is doing for them.

CAREGIVER WISDOM SAYS: The more you understand the cause of the problem the easier it is to identify a solution.

1. Get a cognitive evaluation early on to accurately identify the diagnosis.

2. Work with your medical provider to keep updated as to the newest treatments in medications and research studies, as well as non-medication treatments.

3. Learn about the stages of the disease and special considerations throughout the disease process through educational classes, workshops, trainings, written materials, and attendance at conferences.

4. Attend caregiver support groups to learn from others who are doing the same thing. We all need a place where we feel understood. In addition to support, many groups provide ongoing education, practical assistance and ideas for successful caregiving.

5. Ask a lot of questions. If you don't understand something a medical provider has told you, or someone in a support group has said, ask for clarity. Eliminate as many
question marks as you can.

CAREGIVER CHALLENGE #3: Managing Challenging Behaviors

Dementia places extra strain on the person as (s)he loses the ability to tolerate stress, plan and carry out many usual activities and correctly interpret their world. This leads to excess demand on the person and results in behavior becominga more prominent form of communication. Think of these as "behavioral expressions."

CAREGIVER WISDOM SAYS: As caregivers, we play an important role in anticipating the needs of our person which can help us minimize or prevent upset.

1. Identifying the triggers that lead to excess demand can help us change our own behavior, our approach, and modify the environment or activity as needed.

2. The biggest enemy of the person with dementia is fatigue. The brain is working harder than it did previously and it gets tired sooner. As caregivers we can encourage/
engage the person in rest periods throughout the day.

3. Be aware and take advantage of the person's "best time of day" to engage in the most important activities.

4. Routine, habits, and predictability bring comfort to all of us. These are especially important for someone with memory loss who has difficulty planning and tracking time. Implement a routine that stays relatively similar day to day whether you are at home or traveling. Include social, physical, cognitive stimulating activities and pleasant events.

5. Share your routine with family and friends and help them understand how they can support it.

6. Avoid major changes in the home- such as redecoration,or renovations.

7. Too much noise, too many people, too much chaos equals too much demand. In dementia "less is more".

8. Avoid quizzing, reasoning, giving long explanations or too many details.

9. At times of upset, distraction can be helpful. Some caregivers have found music to be a helpful distractor. Others give the person a big hug or some chocolate; and never underestimate the power of humor.

10. Plan activities in shorter duration- most people do best with activities less than two hours.

11. Work with the person to adapt, modify and eventually substitute activities with a focus on remaining strengths and abilities toward enhancing self-esteem. Find chores around the house that the person can successfully do: folding laundry, sweeping, setting the table. Engage the person in physical activity that can be done together: walking, gardening, moving to music. Provide social interaction with peers through visits in the home, adult day programming, or support groups.

CAREGIVER CHALLENGE #2: Lack of caregiver support

It is not uncommon for caregivers to feel alone as they care for someone with dementia. Caregiving is a complex activity that is demanding. It is best done when there is back up support from friends and family to fill in, provide needed breaks for the caregiver and varied fun interaction with the person with dementia. What can be done if one's family or friends cannot, or will not, help as hoped for?


1. ASK FOR AND ACCEPT HELP. Amazingly, family and friends may not know what would be helpful. They may even believe that because you appear to be handling your role as a caregiver so successfully you don't need any help. It is important to embrace the idea of caregiving as "a team sport". Identify team members and if necessary identify the specific tasks and activities that would be most helpful.

For example, perhaps your sister could initiate a Saturday outing with your mom twice a month. Regularly scheduled events add fun, enhance her weekly routine, AND provide regularly scheduled breaks for you as the caregiver. In addition this provides an opportunity for family and friends to demonstrate how much they love and care about her.

2. Find a support group where you feel comfortable to share your frustrations, challenges and your successes. It is powerful to be with others that understand and "get it", especially if there are few people in your life that are able to. The relationships that develop within these groups often become friendships outside the group setting that can provide ongoing support and social engagement in the future.

3. Don't waste time and energy agonizing or trying to understand why family members won't help. Certainly ask for help, but if it is not forthcoming, use your energy instead to create a "family of choice". We all need people who can be there for us. If our biological family is unable to fill that role, we create a new one that will. These people may be good friends, neighbors, other caregivers, or work colleagues who are ready and willing to help and connect as needed.

CAREGIVER CHALLENGE #1: Managing Grief and Loss

When the question was posed at a caregiver support group, "What is your most difficult challenge as a caregiver?" a man with very sad eyes answered, "Living with the grief". Caregiving is a continual experience of dealing with loss as the person's cognition and function continues to change and decline. Caregivers often hear about caregiver stress or burden. However the underlying culprit may well be caregiver loss.

Pauline Boss, Ph.D, author of the book Loving Someone Who Has Dementia calls it ambiguous loss. It is a loss that is unclear, has no resolution, and no closure. Dementia creates ambiguous loss when the person is physically present but psychologically absent in the way they were prior to the diagnosis.

CAREGIVER WISDOM SAYS: Feel the sadness and be open to new ideas of how to cope with this unique loss.

1. It is normal to feel sad when the person we love is no longer able to be the same and do the things they once did. It changes their life and the relationship we had with
them. It is important to honor our feelings of sadness, to express them and not fear them.

2. Decide to live with what Dr. Boss calls "a less than perfect relationship". Accept the reality of the disease. One caregiver shared that once she was able to get into her
mother's world, she was freed up to enjoy time spent with her mom. She decided to love her mom just the way she was now and stop comparing her to her past self.

3. Accept their changing abilities knowing they are doing the best they can. Focus on what they CAN do and celebrate by doing it with them.

4. Try to change rigid perceptions, to allow you to find meaning and hope. Consider alternative ways of thinking toward this end. Your previous relationship is lost, but it
still exists.

5. Stay connected with friends, family, professionals and/or family of choice- share your story with people and learn from their wisdom as well. Caregiver wisdom serves great purpose as we each continue to grow and adapt to situations we thought would not be possible. However, the shared wisdom produces abundance to the recipients of such wisdom! Don't be afraid to share your wisdom along the way.