Fatigue, stress, little free time, or the feeling of lacking recognition: Relatives, such as those caring for people with dementia in their home environment, often find their work overwhelming or psychologically taxing. For the first time in Germany, a research team from the University Hospital Erlangen and Friedrich-Alexander-Universität Erlangen-Nürnberg (FAU) has demonstrated the positive aspects associated with caregiving in a recent study.
„Caregiving relatives not only experience the negative aspects of home care but also the positive effects that arise from the caregiving itself,“ says research project leader Dr. Anna Pendergrass from the Center for Medical Care Research at the Department of Psychiatry and Psychotherapy of the University Hospital Erlangen. With their recently published study, the scientists aim to contribute to the improvement of the care situation in Germany. Therefore, they are researching the positive aspects, the so-called gains from home care.
Important values in life
In the recently published study, 61.7 percent of respondents stated that their caregiving activities made it clearer to them which values are personally important in their lives. More than half of the study participants „learned a lot,“ and 41 percent reported being able to organize their time better. Further gains – the so-called benefits – include additional experiences: informal caregivers have become more patient and mature, have experienced more appreciation from others, or have gained a more positive outlook on life.
Gains unaffected by load
The study authors arrived at another surprising research finding. „The benefits are experienced completely independently of the burden and duration of care,“ reports Prof. Dr. Elmar Gräßel, one of the study's co-authors and project leader at digiDEM Bayern, the Bavarian Digital Dementia Register. Based on the researched benefits, practical measures can be developed and the living situation of caregivers and those receiving care can be improved. „This would be an important contribution to strengthening home care in Germany,“ agree Dr. Anna Pendergrass and Prof. Dr. Elmar Gräßel.
Beneficial effects
Experienced gains could have beneficial effects on caregivers, care recipients, and the overall situation. For example, initial evidence from international research suggests a buffering effect. This means that negative psychological (e.g., depression) as well as physiological (e.g., physical ailments) effects of care could be mitigated by experiencing gains.
Caregiving family members who participated in the study are, on average, 61 years old and more than two-thirds are women (76.2 percent). The majority are partners and adult (in-law) daughters and sons (87.1 percent) who provide support to their relatives. The average age of the care recipients is 77 years old, and 64 percent are women. The causes for needing care include frailty due to age, dementia, stroke, and cancer, for example.
First-ever special questionnaire worldwide
To scientifically validly capture the benefits of home care, researchers worldwide have developed a special questionnaire for informal caregivers for the first time. With its help, they experience a benefit for themselves. But they also learn that the benefit they experience is the result of their caregiving activities.
When developing the questionnaire, scientists from various disciplines, experts in dementia care and nursing, and relatives were involved. In the subsequent study, researchers surveyed more than 900 family caregivers in a representative pilot survey, supported by the Medical Service (MD) Bavaria. „Our most important goal was to identify favorable factors that lead to more benefits,“ emphasizes FAU dementia researcher Prof. Dr. Elmar Gräßel.
The study was recently published in the journal BMC Geriatrics appeared. Here is the study.
The questionnaire „Benefits of Being a Caregiver“ can be downloaded for free from this website: https://www.psychiatrie.uk-erlangen.de/med-psychologie-soziologie/forschung/benefits-of-being-a-caregiver/
