It is a very difficult journey to care for older adults suffering from Alzheimer’s disease, pushing one’s patience, resiliency, and compassion to the limit. The unpredictable nature of a neurodegenerative disease means that you have to remain calm and supportive of the elderly while he or she goes through constant changes. It is at this point that the disease poses new challenges to the caregiver’s physical and emotional challenges that often overwhelm them and leave them unprepared. Therefore, equipping the caregiver with the appropriate skills and information has evolved into an important factor for the care of the Alzheimer’s patient and, critically, for the caregiver’s well-being and peace of mind.

To better understand the essential skills caregivers need, and how they can navigate the complexities of Alzheimer’s care, we reached out to Brenda Freed. Brenda brings a wealth of experience from her Music Therapy and Music Education background, having pioneered the Music Therapy Program at the University of Iowa Hospitals and Clinics. Her innovative techniques and extensive experience offer fresh insights into improving care for individuals with dementia.

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Q. What are the most important skills caregivers need when caring for someone with Alzheimer’s?

Caregivers of someone with Alzheimer’s need to have the following interpersonal skills: patience, good listening skills, a genuine love for people, and the ability to be understanding and compassionate. It’s also important for caregivers to prioritize self-care. Caregivers will be able to more effectively care for others when they consistently make some time for self-care, even if it’s just 15-20 minutes a day of meditation. Caregivers should be able to learn how to access and use resources in their communities. It’s important for caregivers to have some basic knowledge of Alzheimer’s disease; for example, general knowledge of what is happening in that person’s brain and the behaviors associated with the disease’s mild, moderate, and severe stages. This information will prepare the caregiver for what to expect, enable them to anticipate problems or situations before they arise, and help them be more patient, understanding, kind, and compassionate toward the person with the disease. Other important skills are knowing how to properly transfer someone without injuring themselves, bathing and feeding someone while protecting their dignity, and interacting successfully with that person.

Q. What essential skills do you think should be included in a training program for Alzheimer’s caregivers?

A training program for Alzheimer’s caregivers should include information, tips, and activities to do with the person at every stage of the disease. Information about the disease is useful in knowing what to expect. Tips on how to talk to a person with Alzheimer’s should include the following: not arguing with them; going with the flow of their conversation whether it’s based in reality or not; redirecting repetitive speech or calming the person who’s agitated by singing to them, or reminding them of fun memories from their past that the person will remember in their long term memory, and giving them a favorite healthy snack or playing a game to redirect a person who is wandering or repeatedly expresses wanting to go home. Caregivers should be encouraged to learn as much about the person who has Alzheimer’s as possible. For example, they should learn about the person’s family and close friends and communicate with them to learn what skills and interests the person has. It’s always a good idea to create a memory book to help the person reminisce about good memories in their past. Knowledge of past skills and interests is helpful when planning activities for the person. A few examples are if the person enjoyed chess in the past, they might enjoy a game of checkers or another board game now. If they were a musician or dancer, they might enjoy a certain type of music. If they were a carpenter, they might enjoy toy tools. If they were an artist, try finger painting. If they were a writer, they might find children’s books enjoyable. A training program for caregivers should always include community resources available to them for emotional and caregiving support, as well as what to do in the case of an emergency.

Q. How can caregivers upskill to better handle the progression of Alzheimer’s in patients?

Caregivers can upskill to better handle the progression of a patient’s Alzheimer’s by attending webinars and conferences in person or online, when possible, to stay current on best care practices. Prescribing to newsletters offering support and joining groups or communities of other caregivers online or in person provides networking, support, and feedback opportunities. Many people online offer tips for handling patients with Alzheimer’s. Our favorites are Joanna LaFleur (@Joanna.dementa.expert) and Carrie Aalberts (@dementiadarling). Information, tips, and activities for the mild, moderate, and severe stages are offered in the Mackenzie Meets Alzheimer’s Awareness Program available at www.MackenzieMeetsAlzheimers.com

Q. How can caregivers balance providing care while maintaining their well-being?

Having a schedule and sticking to it helps the caregiver and the entire family meet their needs and feel safe and supported. Creating a schedule that satisfies the needs of the whole family can be a daunting endeavor, but setting up the schedule as a family is empowering. Add the name of the person responsible beside each task, including everyone in the family and considering their strengths and abilities. Team up family members to complete a task together. Whenever possible, include the person who has Alzheimer’s. Here are some examples of what might go on a daily schedule:

1. Set up hours for sleeping and waking
2. Meal time, including meal preparation and cleanup
3. Work/school time
4. Playtime – children and their elderly can play together
5. Nap time or quiet time (reading, listening to music, meditation)
6. Household chore time
7. Flexible time – This is different from playtime. Some tasks might take longer, or a family member might have an unforeseen incident (the child needs help with homework or Gran has an accident in her clothing) that requires immediate attention. Having a little flexible time alleviates stress. 
8. Doctor’s appointments
9. Exercise time
10. Family time
11. Homework time
12. Self-Care time

If you have to hire a caregiver or a different family member to come to care for a loved one while you take a respite, when given a schedule, they will be able to provide consistent care to the person with Alzheimer’s, and the whole family will experience consistency.

Although self-care is last on this list, it should not be last on the priority list. If self-care time is absorbed by some other necessary task, there are other ways to work it in. For example, if a child can do homework or spend time alone with their loved one, the caregiver can squeeze in some self-care during that time. Or, if the person with Alzheimer’s is napping, caregivers can use that time for self-care.

In conclusion, the key to caregivers providing care while maintaining their well-being is to schedule it into each day. If self-care is not on the schedule and slips out of the daily routine, the situation becomes ripe for caregivers to develop their own mental and physical health issues.

Wrapping Up

Caregivers of Alzheimer’s patients require diverse skills to effectively manage the senior’s needs while preserving their health and well-being. As Brenda Freed advises, these skills range from interpersonal qualities like patience and compassion to practical caregiving techniques and personal self-care routines. By participating in training programs, staying informed, and creating a balanced daily schedule, caregivers can provide better care to the elderly without sacrificing their own well-being.