Can There Be Positive Aspects to Caregiving?

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 the themes 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 may expect 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

Why I am Here: The Social Model of Dementia Care

I prefer to keep my articles focused away from me and to place a spotlight on persons living with dementia (PLwD) and their care partners.  At the same time, I think a self-indulgent post may be in order to tell the reader why I have dedicated my life to helping others find "Peace with Dementia" as I like to call it. This is more of an opinion article; while the sample interventions are based in science, I will cite very few sources.

If you visit my website, you will see a dedication to my Grandfather Milton Ragas who had some type of dementia in his last years and my Mom, Yvonne who advocated for him and coordinated his care.

While this was a catalyst for my calling, it does not explain my philosophy of Peace with Dementia.

I started my graduate studies in Gerontology under the direction of Christopher Johnson, PhD who enlightened me to the social model of dementia care.  Dr. Johnson is doing amazing things in a new dementia program at Texas State University. In short, the social model focuses on the person with dementia as a whole person, still capable of joy, fear, pain, delight, and other feelings.  The social model does not contradict, but does differ from the biomedical model of dementia care that focuses on medical treatment and drugs.  Ideally, the two models work together, caring for the body (biomedical) and the mind and spirit (social).  The current system is built upon a biomedical model, leaving a need for some balance and an enormous potential for increased healing through the social model.

Examples of the social model, like non-pharmacological interventions, take time, effort, patience, and empathy.  Examples of these interventions are:

• Studying a person's life history and personality to discover meaningful activities to delight the PLwD;
• Understanding that "problem behaviors" are typically the PLwD communicating a need, not trying to annoy his care partners;
• Discovering the root cause of these behaviors, which could be physical (untreated pain or discomfort) or emotional (fear and confusion where their parents are; a veteran dealing with combat trauma); 
• Using personalized music (Gerdner) to sooth patients who are agitated or combative;
• Utilizing meaningful activities to engage PLwD who are an elopement risk (wandering risk);
• Utilizing Validation Therapy (Feil) with much older PLwD trying to resolve a traumatic past;
• Care partner support groups and groups for persons with early onset dementia;
• and more...

While the above sample do not include pharmaceuticals, they do not necessarily exclude responsible use of drugs. What they always do include is what I mentioned above:  time, effort, patience, and empathy.

The social model fascinates me and it is my calling to educate and collaborate with all care partners who are willing to make the effort: family, friends, professionals, and staff.  In this journey, I appreciate and give credit to those researchers who came before me to discover these methods and credit to practitioners and family members who use these interventions everyday, even though it means more effort. They "get it." I am very blessed to be able to email back and forth with some of these leading researchers and teachers.

The social model means some potential frustration and much trial & error for care partners. It means learning from each person with dementia, the expert.  When one method does not work, we try another. Time, effort, patience, and empathy. The upshot is that when care partners are successful in these methods, the satisfaction and accomplishment is incredible.  Another benefit is saving time.  If you can use non-drug methods to sooth a combative PLwD, you are looking at lower risk of injury (which is amazing alone), as well as not having to document an incident. Stated another way, you are going to spend time somewhere and it may as well be in prevention of combative behaviors rather than the aftermath.

With Care Partner Mentoring, LLC,  I see my mission as four-fold:

1. Listening to the care partner; 
2. Educating & training with the care partner; 
3. Persuading the care partner to take action;
4. Encouraging the care partner when times are tough.

Persons with Dementia are whole persons, not a 'shell of a person' as we are conditioned to believe.  They were care-free children once, most raised families, many founded businesses and served others, and were community leaders. They deserve our love and attention.  As a care partner, you will have good days and bad days like they do.  Perhaps if you end up in the same position, someone will care for you this way.  If you agree with my perspective, we are on the same team and I hope you stay connected with me.  If you do not share my perspective, I hope you read more to consider these ideas.  

We need a very large team.

Thank you for reading my story and hope you will subscribe for updates and like my FB page for other updates.

In Peace,
Matt

Action Items:

• Add a comment or question.  Do you "get it" ?
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Matt Estrade, MA, MBA,  is Gerontologist and Founder/Chief Mentor at Care Partner Mentoring, LLC in Covington/New Orleans, LA, USA. A more extensive biography can be found here.