It is both common and understandable to speak of the caregiving experience as exhausting, unrelenting, and frustrating. The demands and sometimes un-cooperation of a loved one is enough to make you pull out your hair.
When discussing caregiving, the tone is usually melancholy, focusing on the caregiver strain, caregiver burden, loss of freedom, and lack of respite. While we must not ignore these aspects, it is important to step back and re-evaluate caregiving to seek the "silver lining."
What do you think? I hope you will comment at the end of the article and let me know if you have reframed caregiving in a positive way.
At the end of this article, I will link to a custom guide sheet for recognizing positive aspects of caregiving.
In June 2016, the peer-reviewed journal The Gerontologist published a 2015 study from Dr. Sheung-Tak Cheng, Ph.D. from the Hong Kong Institute of Education. The study's main goal was to observe and record positive aspects of caregiving in dementia created naturally by the family, that is, with no help or coaching from the research team.
Fifty-seven primary caregivers, consisting mainly of daughters, but also spouses, sons, in-laws, and even one nephew, kept a voice-recorder diary of any "positive gains" over eight weeks. Cheng defined a positive gain as “something good that happened to them because of the caregiver responsibilities” (p. 453).
Cheng and the team inform us of ten themes after transcribing, coding, and analyzing the caregiver recordings. Here, I present a summary of thethemes in my own words:
1. Learning about Alzheimer's Disease (AD) or other related dementia offered "insight" into what to expect. Whether attending a class, reading a book, or learning directly from the person living with dementia (PLWD), the caregiver felt better knowing what they mayexpect in the future. This knowledge helped in acceptance of the disease and that the disease was causing the behaviors that cause so much frustration. The caregivers learned to not put undue and unrealistic demands on the PLWD.
2. Having a feeling of duty in the caregiver role helped caregivers find ‘motivation' and energy through the day. To be sure, this alone will not sustain a caregiver who ignores their needs. The spousal caregivers who saw their role as honoring wedding vows or an adult child repaying their mother or father for childrearing noted this as important for a positive view.
3. Caregivers in the study appreciated little things that their loved one did well. Persons living with dementia can surprise us all with what they can do and say. It is important to be grateful for these unexpected gifts
4. Caregivers felt confident when committing to the role and doing it well. They felt confident as they became more experienced and handled difficult or frustrating situations well. We are not born knowing how to care for someone with dementia, nor are we all born with the patience required. As with most jobs in life, we figure them out through trial and error. The caregivers in the study are no different, and you are no different in this respect.
5. Just as the clients in my care partner support group tend to express in each session, you cannot change the symptoms of dementia or the person. You learn to be patient and learn to accept the repetition and other frustrating behaviors.
6. Negative emotions and positive emotions go together in caregiving. Caregivers found some success in feeding their positive thoughts more than negative thoughts, thereby influencing their positive emotions. It’s true that your thoughts influence your feelings, so it makes sense that reframing frustrations in a positive way will help emotions.
7. “Letting go” of high self-expectations. This was not common amongst the study participants, but it was suggested by some caregivers and the researchers thought it was important enough to include. Consider the idea that many people are good at their occupation (or hobbies) and hold themselves to a high standard of performance. When starting out as a caregiver, they may have high standards, but a lack of knowledge and experience may prevent reaching high standards.
8. Caregiving brought them closer to the care recipient when normal circumstances would not have otherwise. The time spent together strengthened the relationship, offered time to reflect on the past, and fostered more understanding. An example from the study includes one daughter who held a grudge against her mother since childhood but found peace in discussing it.
9. Study participants found strength in others. Whether through caregiver support groups, other family members, close friends, and community groups, caregivers countered the isolation that strikes so many. Caregiving can be a lonely job, keeping one away from social events, from hobbies, and from the workplace.
10. Caregivers felt good when able to share comfort and experiences with other caregivers. This is perhaps my favorite aspect of a caregiver support group, though it need not happen in a formal group. Caregivers ‘earn’ their wisdom and generally enjoy helping. They have outstanding credibility, having been there, struggled, and succeeded.
Allow me to remind you that these caregivers were not taught by the research study team. These are themes that the team observed as occurring naturally- things that the caregivers created. Perhaps their thoughts will affirm some of your positive gains and inspire you to consider new positive gains.
Action: What you can do now is the reframe your perspective in a positive way, if we are not already. This study shows potential. I hope that you will give these a try yourself. Click here for a guide sheet to start looking at your positive gains!
For a PDF of this article, click here.
Matt Estrade, MBA, CAPS is the Founder and Chief Mentor at Care Partner Mentoring, LLC in Covington/New Orleans, LA, USA. A more extensive biography can be found here.
Biblography
Cheng, S., Mak, E. P., Lau, R. W., Ng, N. S., & Lam, L. C. (2015). Voices of Alzheimer Caregivers on Positive Aspects of Caregiving. The Gerontologist GERONT, 56(3), 451-460. doi:10.1093/geront/gnu118
