Burden, Cope And Gain Experience Of Caregivers Of Patients With Behavioral And Psychological Symptoms Of Dementia

Objective: Combined with qualitative and quantitative study,this study aims to explore the factors associated with caregivers' burden of Behavioral and Psychological Symptoms of Dementia(BPSD)and measure their burden with ZBI.By semi-interviewing them,we would like to explore how the caregivers cope with BPSD and find their gain from the process of caring the patients with BPSD,so that relieve or alleviate their burden,thus improving the quality of life.Methods: Both quantitative and qualitative approaches were used in this study.Convenience sampling was used in quantitative research.106 elderly patients who had BPSD and their family caregivers were conducted from June in 2014 to January in 2016 at the memory clinic of a specific Grade A and First-Class hospital in Shijiazhuang,Hebei Province.Demographic data on the caregivers were collected by a self-designed questionnaire.The BPSD was assessed by the neuropsychiatric inventory(NPI);Caregivers' burden was evaluated by using the ZBI(Zarit Caregiver Burden Scale).Phenomenological method was used to guide the qualitative study.From March 2015 to December 2015,nine caregivers of patients with BPSD were selected by purposive sampling.In order to get data,semi-interview was used and the record was transcribed.Data collected was analyzed by Colaizzi's analysis.Results: Results of quantitative research 1Prevalence of BPSDPeople with dementia had various symptoms,which were assessed using NPI.Delusion was the most frequent behavioral symptom among the patients(N=65,61.32%)followed by hallucination(N=50,47.17%)and anxiety(N=46,43.40%).Appetite and eating abnormalities was the least common BPSD among 12 symptoms,with 27 patients which accounted for 25.47%.Anxiety was both the most frequent and severe symptom.Irritability caused the most distress.2 Factors that affect burden of the caregivers of patients with BPSDA significant difference in burden of the caregivers of patients with BPSD was shown by the different levels of BPSD?hours of taking care per day?income and pain.Results of qualitative researchThe six main themes were summarized as: psychological coping,behavioral coping,dysfunctional coping,personal growth,better relationship,higher level gains.1Theme1—Psychological coping 1.1Accepting the truth: In the process of taking care of patients with BPSD,caregivers came to adapt to the role and accepted the reality of their relative being diagnosed with dementia.1.2Family support: Caregivers began to ask help from their friends or family members to support them spiritually.1.3Self-adjustment: Caregivers began to look after themselves in the process of taking care of patients with dementia.In order to keep healthy,they adjust themselves properly.2Theme2—Behavioral coping 2.1Active coping: Caregivers began to protect or persuade or explain or obey the patients after BPSD occurred to the patients.2.2Plan: In order to avoid the inducing factors and reduce stimulation to the patients,the interviewees made plans about BPSD and implemented them.2.3Begin to believe in religion: After the diagnosis of dementia,caregivers began to believe in religion and keep the faith in it.3Theme 3—Dysfunctional coping 3.1Ignore strategy: Caregivers would ignore or neglect some symptoms of BPSD.3.2Self-blaming: After patients had dementia,caregivers did not recognize or go to ask for medical support.And caregivers blame themselves because of it.4Theme 4—Personal growth 4.1 More patience and more understanding to others: Caregivers were more patient after taking the role of caregiver.Compared with before,they are more understanding to other individuals.4.2Make me stronger and more reliable: Patients with BPSD relied more on caregivers.This allowed caregivers to be stronger.4.3More self-awareness: After the diagnosis of dementia,caregivers began to know themselves better.4.4Know more knowledge and skills about BPSD: Caregivers came to learn more knowledge and skills of BPSD management.5Theme 5—Better relationship 5.1 Closer relationship to the patients: Caregivers became closer to the patients after taking care of them.5.2Make family bond closer: After the diagnosis of dementia,caregivers began to unite and the family became more harmonious.6Theme 6—Higher level gains 6.1Knowing more about the meaning of life and broadening horizon: Caregivers knew more about medical knowledge and their horizon was broadened and they came to realize the meaning of life.6.2Altrustic goal was sparked: After taking care of the patients with BPSD,caregivers wanted to help those who suffered from the similar difficulties.Conclusion:1Delusion was the most common symptom of BPSD,followed by hallucination and anxiety.Appetite and eating abnormalities was the least common BPSD among 12 symptoms.Anxiety was both the most frequent and severe symptom.Irritability caused the most distress.2Factors that affect caregivers' burden of patients with BPSD were the different level of BPSD?hours of taking care per day?income and their body pain.Among these factors,different level of BPSD had the greatest impact on caregivers' burden of patients with BPSD.3In the process of taking care of patients with BPSD,caregivers used different coping strategies and gained from the process.It included psychological coping,behavioral coping,dysfunctional coping,personal growth,better relationship,higher level gains.