As we travel our own unique journeys, most of us find that certain phrases or concepts take on the status of truth in our world view. Our personal principles may not be identical to those of others, but we know what is true for us.
Below, I’ve shared a few of my own truths that I have adopted throughout my years of caregiving experience. Some are specific to dementia caregivers, but most are also applicable to other elder care scenarios.
My Principles of Dementia Caregiving
- Learn about the kind of dementia your loved one has.
The Alzheimer’s Association defines dementia as “an overall term for diseases and conditions characterized by a decline in memory, language, problem-solving and other thinking skills that affect a person’s ability to perform everyday activities.” While Alzheimer’s disease is the most well-known type of dementia, there are many others. Vascular dementia, Lewy body dementia (LBD), Frontotemporal dementia (FTD), Parkinson’s disease with dementia and mixed dementia are some of the most prevalent kinds, and each is characterized by a unique set of symptoms, diagnostic criteria and changes in the brain. For this reason, it’s important that the physician treating your loved one (often a neurologist) is qualified to make a diagnosis, monitor their progression and recommend strategies for managing symptoms. Learning about the type of dementia that your care receiver has (as well as their other health issues) will help you better understand their behavior and provide more compassionate care. - Be as flexible as possible.
Dementia patients’ moods, behaviors and abilities often change not only from day to day, but also from moment to moment. If your loved one is having a bad day, don’t take it personally. Do what you can to keep them safe, healthy and content while hoping that tomorrow will be better. Just accept that there will be ups and downs throughout your journey. Paying attention to patterns in their behavior can help you avoid situations that trigger agitation or confusion and devise a daily routine that works well for both of you. However, no strategy or solution is totally foolproof in dementia care. This is why flexibility is key. On particularly frustrating days, remember that your loved one doesn’t have full control over their actions because their brain is broken. Try to focus on the important things that are in your control instead of letting small disruptions become larger than they really are. - Accept that others will offer advice.
People with no understanding of your loved one’s health or what caregiving entails will be more than happy to tell you how you should handle these things. Since they haven’t been in your shoes, they can only speculate about how they would handle the challenges you’re facing. Take a deep breath and smile when you receive unsolicited advice. Then do what you feel is right for you and your care recipient. If you feel you need some insight on caregiving, find someone who has walked this path and ask for their perspective. Both in-person and online dementia support groups are excellent sources of tips and support. - Detachment is vital for your mental health.
We need to detach from our care receivers enough to preserve our own sense of identity. This allows us to equate our role as a caregiver to a small (yet important) part of our lifetime experience rather than the defining part of who we are and what we do. If you have a controlling, cranky elder whom you cannot please, you mustn’t let their behavior erode your sense of self to the point that you feel you are a failure. Even those who are caring for kind and pleasant family members struggle not to become overwhelmed as they put their heart and soul into caregiving. - Empathy is necessary for compassion.
No, this is not a contradiction of my point above. While we must detach from our care receiver to remain a separate being and maintain perspective in our lives, empathy is what makes us compassionate, attentive caregivers. When we empathize with someone, we put ourselves in their place. We consider what it would feel like and how we would act if we were in a similar situation. What would we want someone to do for us so that we could feel better? Remember, empathy is different from sympathy. Of course, we bemoan their predicament, but empathy helps us gain a deeper understanding of their experience. You must find balance in this practice, though. There is such a thing as being too empathetic. Being too in tune with your care recipient’s emotions and physical symptoms for too long can be exhausting and lead to enmeshed relationships, caregiver burnout and even compassion fatigue. Be compassionate, but don’t hesitate to set healthy boundaries and ensure they’re respected. - Self-care is not a luxury.
If we neglect our own health and needs, we will pay a price. Caregiving exacts an indisputable physical and emotional toll. Far too many dementia caregivers focus on their loved ones’ wellbeing while putting their own on the back burner. Do not do this. Be sure to prioritize your own annual doctor’s appointments and regular medical tests and screenings. If you suspect a new or worsening health problem of your own, don’t ignore it. Early detection and intervention are important for managing countless medical conditions. Exercise the same vigilance to your own health that you do to that of your loved one. Addressing things head-on leaves less room for health setbacks that can be inconvenient at best and debilitating or fatal at worst. Taking care of your own needs benefits you and your care receiver. - Don’t judge the quality of your care by how your care receiver acts.
Everyone has bad days, and seniors living with dementia are no exception. There will be times when they are frustrated or depressed or their symptoms seem to worsen. If you are educating yourself on how to cope with negative or difficult behavior, and asking for help when you need it, you are likely doing just fine. In particularly trying times, reflect on a good day when you and your care recipient enjoyed each other’s company. See if you can replicate that scenario to some degree. If you can’t, don’t fret. Instead, try to embrace gratitude and appreciate this time (and others) that you had together. There will likely be more pleasant times like these in the future. - Know your limits and ask for help.
Nearly all caregivers for dementia patients eventually need some help. It’s vital to keep in mind that caregiving must be a team effort. Whether you receive respite care provided by friends or family, hired in-home caregivers, adult day care centers, temporary stays in assisted living or a skilled nursing facility, the bottom line is that dementia caregivers need assistance. The demanding nature of this condition means that one person simply cannot do it all. Without at least occasional breaks, neither the caregiver nor the care receiver is likely to have the best quality of life that can be realistically expected. This is especially true as a loved one reaches the later stages of dementia and requires around-the-clock care to ensure their safety.
Many of your truths may be different, but I believe that some of them will be similar to mine. It’s what we caregivers share—that fellowship of having given of ourselves to help our vulnerable loved ones.