The African American Advantage in Dementia Caregiving

Research often suggests that African American caregivers fare relatively well when supporting dementia patients. African American caregivers tend to be more resilient, experience less emotional distress, are more likely to report positive experiences, and experience less depression.

This is an interesting pattern and an area that researchers have been working hard at trying to understand.

One study into the topic examined the emotional outcomes of caregivers over time. This gave the authors the chance to look at how emotional responses varied as the dementia progressed and as caregivers became more accustomed to their role. 

The authors found that, for caregivers who lived with their patients, levels of negative emotion tended to increase or remain the same over time for white caregivers. On the other hand, black caregivers tended to experience a decrease in negative emotions.

Emotional Patterns in Caregiving

A steady decline in emotional state during caregiving is sometimes described as ‘wear and tear’. It can occur as the stresses of caregiving start to add up, especially for caregivers who have few coping skills. 

The pattern often means that caregivers begin to have more negative experiences over time and fewer positive ones. 

Such a pattern might not be surprising, as caregiving is a stressful role, one that comes with many challenges. These challenges can quickly feel overwhelming, especially for people who did not expect to be acting as a caregiver. 

The current research suggests that African American caregivers do have some coping advantages. Influencing factors include a greater sense of social support and a stronger religious background. 

Indeed, faith often plays a strong role in the lives and experiences of African American caregivers. Many even view their caregiving role as a form of personal ministry and some receive support from their church community.

These patterns mean that African American caregivers may feel more supported and have a stronger sense of purpose in their caregiving role compared to other racial groups. 

Another study examined the way that caregivers reacted to dementia-related changes. 

This is an important area, as dementia caregiving comes with more complexities than caring for someone who is not cognitively compromised. The emotional strain of watching a loved one appear to fade away is high and caregivers can experience a type of grieving process as a result.  

The study found that African American caregivers tend to largely focus on the parts of their family member’s personalities that remain, rather than dwelling heavily on the areas that are lost. Doing so may make it easier to see the positive aspects of the caregiving role and be less overwhelmed by dementia-related changes. 

This outcome highlights the idea that a person’s caregiving experience isn’t only based on the situation that they’re experiencing. Instead, the way a person views the caregiving role and their family member may influence how easy or difficult they find the caregiving role. 

Finding Your Balance as a Caregiver

The balance between ‘hanging on’ and ‘letting go’ is a challenging one for dementia caregivers. It’s also a very important topic. 

As the disease progresses, patients become less and less like their former selves. Their understanding of the world around them shifts and they are often unable to remember key things about their life. This can progress to the point where the dementia patient has little recognition of loved ones. 

This lack of memory and understanding creates many challenges for caregivers. 

An example of this is incontinence, which often occurs at some stage in dementia. Handling incontinence with a patient that doesn’t fully understand what is going on can be incredibly difficult. Some caregivers find that family members become aggressive and that they need to rely on a variety of strategies to keep their family member clean and dry. 

The COVID-19 crisis has created extra complications for caregivers too, as dementia patients may not understand the events that are occurring and may struggle to remember what they have been told. This can mean that they do not follow social distancing recommendations or that they feel deeply upset that family members do not visit. 

There’s also something deeply upsetting about seeing a person that you love become less of themselves. 

Focusing on the parts that still remain is an important approach, one that is often highlighted in blogs and books on dementia. 

One of the studies we mentioned before talked about how caregivers saw their family members as “still here”, despite changes. The caregivers often highlighted important characteristics and capabilities, like a sense of humor and the ability to still engage in some parts of the person’s previous life. 

There’s an interesting book called I’m Still Here, which focuses on recognizing the strengths of a patient and focusing on the positive. The treatment ideas suggested may help caregivers to have a less stressful experience with dementia, while also providing a better quality of life and connection for the senior. 

On the other hand, it’s still important to recognize the losses with dementia. 

Seeing these and grieving for these can help with coping too. The book highlighted before is likely to cover the topic. Another interesting choice is called The 36-Hour Day. 

This book is a guide for anyone who cares for or supports a person with dementia. There have now been six editions of the book and it continues to receive very good reviews. 

The book covers many different aspects of dementia care, from the simple to the complex. The most powerful thing about the book is how just how specific it is. The authors go into depth about challenges that often aren’t talked about, showing you practical solutions for problems that can easily feel overwhelming.

You can also check out The Mindful Self-Compassion Workbook.

This book doesn’t focus on dementia at all. It has a section on caregiving, but caregiving isn’t the emphasis of the book either. 

Instead, the workbook focuses on accepting and responding to your emotions. It’s one that I’ve worked through myself. Some of the techniques and ideas are powerful – and very relevant for caregiving. 

I love the way that the author talks about accepting what you feel without judgment. She also talks about how to do so without being overwhelmed by your emotions. This distinction is important as honestly, emotions can be overwhelming. 

She also highlights the distinction between empathy and compassion. 

The idea here is that compassion allows you to connect with the person you are caring for and provide support, without being overwhelmed by empathy for them. You still care for the person, but you’re not burdened by what they feel. While I can’t do the topic justice here, it is a very important area to check out. 

Final Thoughts

The studies on African American caregivers suggest that social support and a sense of purpose are helpful for coping with caregiving, along with an emphasis on seeing the positive aspects of the caregiving role (even when these can be difficult to find). 

Such outcomes aren’t just limited to African American caregivers. 

Resilience in caregiving is something that anyone can learn. The books recommended above can all be important stepping stones in this process. 

One of the most important things is to take time for yourself. Find ways to meet your own needs. If it’s not possible to physically take time out (and, let’s face it, sometimes it simply isn’t), then look for other approaches. The self-compassion book highlighted above talks about this area, as self-compassion is a practice that can be helpful in the midst of a crisis.