Quality of life and occupation for people with dementia: the perception of caregivers

Abstract

English: Advanced dementia is a very complex condition and requires that caregivers be equipped to administer care successfully. Therefore, quality of life (QoL) for persons with dementia in long-term care facilities relies heavily on the knowledge, skills and attitudes of caregivers who spend the majority of time with these residents. Although various professional bodies all over the world encourage person-centred care, (i.e. promoting the focus on the resident with dementia as a unique individual), most residential care facilities in the South African context still measure QoL as a list of completed tasks at the end of the day. Therefore, the caregivers’ understanding and application of a person- centred care approach needed careful consideration. Due to the fact that consultant occupational therapists who designed individualised personcentred care programs for residents with dementia depends on the caregivers to implement these programs, a study was undertaken to describe and explore caregivers’ perceptions of QoL, person-centred care and occupational engagement for residents with dementia. A triangulation, mixed methods design was applied with a comprehensive sample of full-time caregivers employed at a residential care home (RCH) in Bloemfontein. The researcher specifically chose this approach with interview schedules (qualitative findings) and structured questionnaires (quantitative results). Qualitative findings were compared and contrasted with quantitative results in order to verify similarities and to identify discrepancies between the two data sets. Literature was also consulted to support similarities and discrepancies. The mixed methods triangulation design, therefore, contributed to the trustworthiness of the study. Results and findings indicated that personal and organisational factors had a major impact on the perspectives of the caregivers. The caregivers were mostly conditioned to operate within an approach associated with meeting the physiological needs of the residents and addressed individualised care as a list of separate chores associated with each resident. One of the reasons supporting a more physiological approach is the organisational culture found in units where care is provided for persons with dementia. It was also evident that if person-centred care could be experienced by caregivers as receivers (employees of an organisation), it might enable them to embrace the personal perspectives and needs of each resident individually. Personal factors that impacted the perspectives of the caregivers were their home circumstances, the general public opinion and the relationship between them and the family of residents. It appeared that stress factors associated with their home circumstances further aggravated the burden of care at work, negatively impacting person-centred care. The general public opinion was led by ageism, which emphasised the low status of their job as caregivers. Lastly, the relationship between the caregivers and family of the residents was guided by misunderstandings, unrealistic expectations and role confusion between these two stakeholders. The caregivers were guided by the priorities of the family which were, similar to those of the organisation, focused on physiological care associated with the traditional model, rather than person-centred care. The value of the study is that it indicated that a culture change towards care would be beneficial to the organisation at every level. A move away from the traditional medical-focused care approach could provide new opportunities for growth and development. This implies that the personhood and dignity of every employee and resident could be promoted, leading to a life worth living.

Afrikaans: Gevorderde demensie is ʼn hoogs komplekse toestand wat vereis dat versorgers genoegsaam toegerus moet wees om sorg suksesvol toe te dien. Lewensgehalte vir diegene met demensie in langtermynversorgingsinstansies berus dus grootliks op die kennis, vaardighede en houdings van versorgers wat meestal by hierdie inwoners is. Hoewel verskeie professionele rade wêreldwyd persoongerigte sorg (met die klem op die persoon met demensie as ʼn unieke individu) aanmoedig, beskou die meeste residensiële versorgingsinstansies in Suid-Afrika steeds lewensgehalte as ʼn lys voltooide take aan die einde van ʼn dag. Versorgers se begrip en toepassing van ʼn persoongerigte sorgbenadering het hiervolgens dus oorweging vereis. Aangesien raadgewende arbeidsterapeute wat individuele, persoongerigte sorgprogramme vir inwoners met demensie ontwerp, van versorgers afhanklik is om die programme te implementeer, is ʼn studie onderneem om versorgers se persepsies rakende lewensgehalte, persoongerigte sorg en die werksbetrokkenheid van inwoners met demensie te ondersoek. ʼn Gemengde triangulasie metode is toegepas op ʼn omvattende steekproef voltydse versorgers in diens van ʼn residensiële versorgingsinstansie in Bloemfontein. Die navorser het spesifiek hierdie benadering met onderhoudskedules (kwalitatiewe bevindinge) en gestruktureerde vraelyste (kwantitatiewe resultate) gekies. Kwalitatiewe bevindinge is met kwantitatiewe resultate vergelyk om ooreenkomste tussen die twee stelle data te bevestig en verskille te identifiseer. Die ontwerp het dus tot die betroubaarheid van die studie bygedra. Die resultate en bevindinge dui daarop dat persoonlike en organisatoriese faktore ʼn wesentlike invloed op die perspektiewe van die versorgers het. Die versorgers is grootliks gekondisioneer om ʼn benadering te volg wat daarop gerig is om aan die fisiologiese behoeftes van die inwoners te voldoen en sorg te beskou as ʼn lys afsonderlike take ten opsigte van elke inwoner. Een van die redes vir ʼn oorwegend fisiologiese benadering is die organisatoriese kultuur in eenhede waar sorg voorsien word aan persone met demensie. Dit blyk dat indien persoongerigte sorg deur versorgers as ontvangers (werknemers van ʼn maatskappy) ervaar kan word, dit hulle dalk in staat kan stel om die persoonlike perspektiewe en behoeftes van elke individuele inwoner aan te gryp. Persoonlike faktore wat die perspektiewe van die versorgers beïnvloed het, sluit in hulle huislike omstandighede, die algemene openbare mening en die verhouding tussen hulle en die inwoners se gesin of familie. Dit blyk dat stres tuis die versorg-las by die werk vererger en persoongerigte sorg negatief beïnvloed. Die algemene openbare mening is deur ouderdomsdiskriminasie gevorm en beklemtoon die lae status van die versorgers se werk. Die verhouding tussen die versorgers en die inwoners se gesin/familie is deur misverstande, onrealistiese verwagtinge en rolverwarring tussen die twee groepe belanghebbendes versuur. Die versorgers is gerig deur die prioriteite van die familie – wat ooreenstem met die organisasie se fokus op fisiologiese sorg, wat weer met die tradisionele model eerder as persoongerigte sorg verband hou. Die waarde van die studie is daarin geleë dat dit aandui dat ʼn kultuurverandering ten opsigte van sorg op alle vlakke van die organisasie voordelig sal wees. ʼn Skuif vanaf die tradisionele, mediesgerigte sorgbenadering kan nuwe groei- en ontwikkelingsmoontlikhede inhou. Dit beteken dat die individualiteit en waardigheid van elke werknemer en inwoner verbeter kan word en volwaardige, kwaliteit lewens tot gevolg kan hê.