More than 6.5 million Americans are living with Alzheimer’s or related dementias in 2022, and more than 15 million family caregivers provide unpaid care in the community. Given how demanding active caregiving can be, family caregivers for Alzheimer’s and dementia face special challenges. Caregivers not only have many responsibilities to look after their family members with Alzheimer’s but also need to take care of their own well-being and connect with others who understand. Over the next decade, the number of older adults living with dementia is expected to rise dramatically. African Americans account for approximately one-tenth of the 15 million family caregivers for older adults living with dementia in the United States. Dementia is especially a big worry for Black/African American family caregivers because Black/African American individuals are twice as likely as non-Latina/o White individuals to develop Alzheimer’s or related dementias. Also, Black/African American people are more likely than non-Latino/a people to care for family members with dementia, but they are less likely to seek medical and social help. Therefore, the impact might be larger for this population.
It is important for family caregivers to adapt their practices as Alzheimer’s and dementia progress and to take care of their own well-being. This blog aims to provide Black/African American family caregivers with concise information on how to care for an individual with Alzheimer’s or another form of dementia in different stages and to share resources for help and support.
How to care for someone with dementia?
In the early stages of Alzheimer’s, many individuals function independently. They are often still able to drive, participate in social activities, volunteer, and work. Your role as a care partner in this stage plays a critical role in providing support and companionship.
Finding a new balance: One of the greatest challenges for care partners is determining how much and when to provide assistance. Finding the balance between interdependence and independence might help both of you gain confidence. Here are some tips used by other care partners:
Safety first: Is it safe for a person with dementia to do this task alone? Provide encouragement and continue to supervise if there is no immediate risk of harm.
Avoid stress: Prioritize tasks that will not put the person with dementia under unnecessary stress.
Make a positive assumption: Assume that the person with dementia can complete the task. If you sense frustration, try to figure out what’s causing it.
Create a help signal: Determine a cue or phrase you may use to confirm if the person with dementia is comfortable receiving assistance. For example, if the person is having difficulty recalling a name or term, give a nod to indicate that it’s okay to speak up.
Talk it over: Have a direct conversation with the person with dementia about their frustrations and needs. Talk about it, then make a plan.
Maximizing independence: Try to focus on the person’s strengths and help them remain as independent as possible. For example, if they are still comfortable driving, you may offer to sit next to them.
Understanding emotions: During the early stage of dementia, both you as a care partner and the person with dementia might experience emotions such as denial, fear, stress, frustration, and depression. Learning to recognize your feelings will help you move forward and assist the person with dementia to live the best life possible.
Taking care of yourself: Participating in activities that increase your own well-being will help reduce your stress level. You can think about ways to get support and build a support network. Also, connecting with other care partners can bring encouragement and comfort.
The middle stages of Alzheimer’s are typically the longest and can last for years. The person with Alzheimer’s will demand more care as dementia progresses. He or she might have difficulties expressing thoughts and performing routine tasks. It’s important to seek the support you need as a caregiver during this time. Here are some concerns in the middle stage of dementia:
Changes in behavior: The person with dementia may experience sleep changes, physical and verbal outbursts, and wandering in this stage. Understanding frequent behaviors during this stage and how to help the person can be beneficial.
Communication: As dementia progresses, the person will gradually lose the ability to find correct words or terms, express thoughts, and have difficulty understanding others. As a caregiver, you can adapt to simple changes, such as speaking slowly and clearly in a gentle tone. If you see sudden changes in communication, contact a doctor, as this could suggest other medical issues or prescription side effects.
Daily care needs: As dementia worsens, losing independence and privacy can be a tough issue for the person with dementia. He or she may need family caregivers’ assistance with eating, dressing, and grooming. Your patience and sensitivity will go a long way in helping him or her through it.
Driving: The person with dementia will need to stop driving in the middle stage of dementia. Explain your safety concerns by giving specific examples and assure the person you will do everything to make rides accessible.
The last stage of Alzheimer’s can last anywhere from a few weeks to several years. Intensive, around-the-clock care becomes necessary as the condition advances. The person with dementia may have difficulty eating and swallowing, need help walking and eventually become unable to walk, and be vulnerable to infections, especially pneumonia. Here are some guidelines for caregiving in the last stage of dementia:
Late-stage care options: Since intensive care is needed during the late stage, it may require more than what you can provide at home, even with additional help. To satisfy the intensive care needs, family caregivers might consider moving the person into a facility or places that can provide quality care. Discussion on end-of-life care should ideally take place while the person with dementia is still capable of making decisions and sharing wishes for life-sustaining treatment.
Food and fluids: As the person with dementia becomes less active in the last stage, he or she may require less food and lose their appetite. It is important for caregivers to monitor their eating. For example, if the person doesn’t have an appetite, adding sugar to food and serving their favorite food may be helpful. Doctors even suggest supplements between meals to add calories if there is a weight loss problem.
Bowel and bladder function: The person with dementia may have difficulty with toileting at this stage. To help them live better lives, caregivers can make some strategies such as setting a toileting schedule, limiting liquids before bedtime, using absorbent and protective products, and monitoring bowel movements.
Infections and pneumonia: Since the person with dementia at this stage will not be able to move around, it can make them more vulnerable to infections. To help prevent infections, caregivers can help the person keep the teeth and mouth clean, treat cuts and scrapes immediately, and protect them against flu and pneumonia.
Pain and illness: In the late stages, communicating pain becomes more difficult for the person with dementia. If you suspect pain or illness, contact the doctor as soon as possible to determine the cause. To recognize pain and illness, caregivers can look for physical signs, pay attention to nonverbal signs, and be alert to behavioral changes.
Caring for family members suffering Alzheimer’s can be both gratifying and difficult. Caregivers themselves might experience physical, psychological, emotional and mental changes when they care for their loved ones. Considering the fact that older African American individuals are approximately twice as likely to have Alzheimer’s or other dementia as older white individuals, caregiver burden is especially heavy for this population. Therefore, it is important for African American caregivers to learn more about appropriately supporting their loved ones with dementia and also taking care of their own physical and mental health.
Caregiving – Alzheimer’s & Dementia
Family Care Guide
Black Americans and Alzheimer’s