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The positive aspects of caregiving for dementia

Senior couple laughing

Question: Is “Caregiver Joy” an Oxymoron?

Answer: I must admit that if you’ve been reading my blog on a regular basis, the good news is few and far between. So before I dedicate a blog to the important topic of caregiver stress, let’s concentrate on what might be the positive and even enjoyable aspects of caregiving.

As you might expect, the study of the positive aspects of caregiving has received little attention in the research related to Alzheimer’s disease and dementia. My colleague at Sunnybrook, Dr Carole Cohen, has been one of the pioneers in this area, studying the topic for over 20 years. What has become apparent, is that being able to find and focus on the positive aspects of caregiving has important outcomes including reducing caregiving stress, improving emotional status, and possibly reducing the likelihood of institutionalization. Dr Cohen has determined that being able to find at least one positive aspect to caregiving is present in about three quarters of caregivers.

So what do caregivers identify as being positive or enjoyable about caregiving? Responses include having the love and company provided by the patient, feeling the relationship has been strengthened by the caregiving, enjoying pleasant interactions with the patient, improving the relationship with the patient and other family members, sharing past memories, feeling accomplished and proud in the role of a care provider, being able to fulfil a duty, obligation, or responsibility, being able to make proactive decisions, and being gratified by the fact that their care is leading to the avoidance of institutionalization. For some, the small daily moments of smiles, laughter and joking is enough to keep caregivers going.

Does finding pleasure in caregiving lead to less burden and stress, or does less burden and stress lead to greater ability to find pleasure in caregiving? The answer is probably both. Less caregiver depression and fewer behavioural problems exhibited by the patient have been associated with more positive caregiver experiences, but being able to spend less time assisting the patient with basic activities of daily living has also been associated with more positive caregiver experiences. Some researchers have noted that being able to find pleasure in overwhelmingly negative experiences can be an excellent coping technique for caregivers. Other research has described the importance of the “search for meaning” of the experience as being a positive and necessary activity for caregivers.

While emphasizing the positive aspects of caregiving is important and potentially beneficial for both patients and their caregivers, there is a possible downside. Some caregivers may be convinced that they are the only ones who can adequately care for their loved one with dementia. This may impede getting the extra care they need from community sources, and/or lead to refusal to institutionalize, even when it might be in the best interests of the patient and their caregiver.

As a Memory Doctor, I believe it is one of my responsibilities to act as cheerleader for the caregivers of my patients. I always try to emphasize what a great job they are doing and how they are ultimately ensuring that my patient has as good a quality of life as possible. I can’t always convince them that caregiving is enjoyable, but I can usually help them to feel a sense of mastery and satisfaction in their role.

About the author

Dr. Nathan Herrmann

Dr. Nathan Herrmann is an affiliate researcher/scientist with Sunnybrook. For 25 years Dr. Hermann has been a memory disorders specialist. He has done research in the fields of mental health in the aging, including dementia, Alzheimer’s disease, depression, and suicide. Read his blog series: The Memory Doctor.