Building a Care Team for Memory Loss
Why You Need a Care Team
It’s hard to comprehend the impact of caring for a loved one with dementia until you have lived it. Dementia has been called the long goodbye for a reason. Overseeing a loved one’s care requires a tremendous amount of time and planning, and there are many moments of grief along the way.
Like millions of others, my family has been on this journey for the past 8 years. I am the primary care partner for a parent with dementia that is now under the guidance of Hospice. It’s been a constant learning experience; there have been a few very difficult decisions and some heartfelt losses.
Please don’t feel sorry for me. It’s also been eight years filled with smiles, reminiscing, and cherished memories.
My mother’s Hospice team calls her a ‘breath of sunshine’. That’s partly because my mother is a truly kind and gentle soul, but it’s mostly thanks to the efforts of a proactive care team.
Every day, we set out with the goal of happiness for my mom. You heard me right, our goal is happiness! People living with Alzheimer’s disease can have many happy times. Since her diagnosis, I’ve been committed to helping family members, friends, and healthcare professionals make meaningful connections with mom.
I decided to focus on helping others make connections for two reasons:
As a gerontologist, I know that my mom is unable to independently initiate a change in her own mood, but with the right approach, the people around her can help her feel content, safe, and even joyful.
I knew that I could not do it alone and that setting up others for success would increase their willingness to contribute.
It has not always been easy, but I can say without hesitation, that mentoring others to be part of our care team has not only enhanced my mom’s life, it’s also enhanced mine.
How to Build Your Care Team
The term “care team” evolved from individual clinical practices, and typically includes the people who plan and coordinate the delivery of care for a patient - a doctor, nurse, and other specialists.
These days we also use ‘care team’ to talk about our aging population’s support system. The team concept now includes family and friends that perform tasks, such as companionship, help with household chores and personal healthcare for those aging in place or in care communities.
Step 1 - Creating a Care Plan
Successful care teams operate from personalized care plans. Those plans are reviewed and updated regularly and shared with family and professionals. Most care plans cover details regarding daily tasks such as bathing, eating, and taking medications, but it is also important to build the plan around the person’s emotional and social needs.
To help the care team make connections, consider including the following topics as part of your care plan:
Reminiscing - What are some of the person’s favorite memories? How can you use photos or narrated videos to help with reminiscing?
Music - What type of music does the person enjoy? Does he or she enjoy listening to music at certain time of day or during a certain activity?
Socializing - What topics or activities resonate? Which should be avoided?
Step 2 - Building Your Team
In addition to a having a personalized care plan, successful care teams also have a proactive leader. Being the leader of a dementia care team is a demanding task.
Depending on your situation, you may lack support from friends and family or the financial resources to hire respite care. At times, it may feel like doing everything yourself is the easiest (or only) option. In reality, shouldering all of the caregiver responsibilities is unsustainable, and you will risk declining health for you and your loved one.
As the leader of a care team, you must be both resourceful and persistent when it comes to getting others involved in the care of your loved one. Consider the following tips to help you build a network of others to support you.
Ask for Help
Often, people that take the lead on a loved one’s care are nurturers by nature. We are used to taking care of others and asking for help does not always come naturally. It’s important to accept that you cannot do it alone, and actively seek others to be part of your team.
Set Up Teammates for Success
Include other family members and friends in activities they will enjoy. For example, we make video phone calls with distant family members part of our care plan. My niece can be a valuable member of our care team simply by calling us, so mom can see and hear her great grandson.
Ask Without Expectation
This one can be hard. When you devote so much of yourself to the care of a loved one, it’s hard not to have expectations for other family members or friends. However, in my experiences, caregivers that focus on gratitude and let go of resentment are able to build supportive and productive teams.
Explore Community Resources
Care teams are endlessly diverse. They can include lifelong friends, family members from all generations, care professionals, volunteers, or other people in the community dealing with similar challenges. Explore opportunities for getting involved in local support groups or events through faith-based organizations, the Area Agency on Aging, or the Alzheimer’s Association.
Step 3: Cherish Your “Wins”
Your dementia care experience will likely evolve and change over time.
There will always be tough times, but there will also always be opportunities to make connections. Even if it’s just a smile or a look of comfort, those connections are vitally important to helping your loved one feel safe and comfortable.