Purpose. The aims of this thesis were to study the feasibility of implementation of Dignity Therapy in older persons with early stages of dementia and their chosen caregiver by adapting the dignity therapy question protocol to both patient and caregiver, and to examine the themes emerging from the resultant dual voice generativity documents. Methods. Community-dwelling persons 60 years and older diagnosed with mild dementia and their chosen caregiver underwent dignity therapy separately using a modified version of the dignity therapy question protocol for the caregiver. The resultant edited transcripts were then joined to create a “dual-voice” generativity document which was then presented to the dyad. Clinical measures of dignity, mood, anxiety, caregiver burden, and hopelessness were carried out before and after the therapy for descriptive purposes and to provide clinical context to our qualitative data. The transcripts were analysed using the Interpretative Phenomenological Analysis (IPA) methodology. Results. All 12 participants (6 dyads) included in the study completed the study protocol. The patients had a diagnosis of Mild Cognitive Impairment (33%), Alzheimer’s Dementia (50%), and Parkinson’s Disease Dementia (17%) (mean age +/- SD = 76 +/- 8 years ; male = 67%; mean MoCA +/- SD = 22 +/- 1.3). All patients had at least a secondary school education (33%) and the majority had a tertiary education (67%). All patients were married and all chosen caregivers were their respective spouses. The use of the adapted dignity therapy question protocol with the caregiver allowed for the creation of a dual-voice generativity document and the procedures were well-tolerated and found to be acceptable by all 12 participants using the Dignity Therapy Protocol Feedback Questionnaire (DTPFQ); 67% reported that the dual-voice generativity document would be helpful to their families. Qualitative analysis of patterns of meaning in the data revealed four superordinate themes related to relationships (including togetherness and self-actualisation through the other), their roots (including the social context of their family background, transgenerational influences, and salient interpersonal beginnings and shared memories), respect (both inherent as well as derived from personal and professional roles), and receding health and the dawn of the ending (including concerns related to the future and integrity concerns). There was strong convergence in patients and their caregivers in all four superordinate themes emerging from the analysis. Conclusions. The adaptation of dignity therapy to patient-caregiver dyads in early dementia is well-tolerated and results in a rich dual-voice generativity document revealing a strongly convergent set of themes relating to meaning. Addressing and resolving issues related to togetherness, self-actualisation, decline and eventual demise in light of a person’s roots and significant roles assumed during their life may provide fertile areas for therapeutic intervention in the early stages of dementia using a dyadic approach. Future prospective studies using mixed methods are needed to assess the impact of therapeutic interventions based on Dignity in Care on mental wellbeing and caregiver burden, as well as its impact on patient care and behavioral and psychological symptoms with advancing dementia.
Obiettivo. Gli obiettivi di questa tesi erano di studiare la fattibilita’ dell-implementazione della Dignity Therapy nelle persone anziane in stadi precoci demenza e nel loro caregiver adattando il Dementia Therapy Question Protocol sia al paziente che al caregiver, e di esaminare i temi emergenti dal risultante documento di generattivita’ a’ doppia voce. Metodo. Le persone residenti in comunità di età pari o superiore a 60 anni con diagnosi di demenza lieve e il loro caregiver scelto sono stati sottoposti a terapia della dignità separatamente utilizzando una versione modificata del Dementia Therapy Question Protocol per il caregiver. Le trascrizioni modificate risultanti sono state quindi unite per creare un documento di generatività "a doppia voce" che è stato poi presentato alla diade. Le misure cliniche di dignità, umore, ansia, burden del caregiver e disperazione sono state eseguite prima e dopo la terapia a scopo descrittivo e per fornire un contesto clinico ai nostri dati qualificativi. I transcipt sono stati analizzati utilizzando la metodologia Interpretative Phenomenological Analysis (IPA). Risultati. Tutti i 12 partecipanti (6 diadi) inclusi nello studio hanno completato il protocollo di studio. I pazienti avevano una diagnosi di decadimento cognitivo lieve (33%), demenza di Alzheimer (50%) e demenza di Parkinson (17%) (età media ± SD = 76 ± 8 anni; maschio = 67%; MoCA ± SD medio = 22 ± 1.3). Tutti i pazienti avevano almeno un'istruzione secondaria (33%) e la maggior parte aveva un'istruzione terziaria (67%). Tutti i pazienti erano sposati e tutti i caregiver scelti erano i rispettivi coniugi. L'uso del protocollo della terapia della dignità adattato con il caregiver ha permesso la creazione di un documento di generatività a doppia voce e le procedure sono state ben tollerate e sono risultate accettabili da tutti i 12 partecipanti utilizzando il Dignity Therapy Protocol Feedback Questionaire (DTPFQ) e il 67% ha riferito che il documento di generatività a doppia voce sarebbe stato utile alle loro famiglie. L'analisi qualitativa dei modelli di significato dei dati ha rivelato quattro temi sovraordinati relativi alle relazioni (tra cui "unione" e autorealizzazione attraverso l'altro), le loro radici (incluso il contesto sociale del loro background familiare, le influenze transgenerazionali e gli inizi interpersonali salienti e i ricordi condivisi) il rispetto (sia intrinseco che così come derivato da ruoli personali e professionali), e salute sfuggente e l'alba della fine (comprese le preoccupazioni relative al futuro e le preoccupazioni sull'integrità). È stata dimostrata una notevole convergenza nei pazienti e nei loro caregiver in tutti e quattro i temi sovraordinati emersi dall'analisi. Conclusioni. L'adattamento della terapia della dignità alle diadi paziente-caregiver nella demenza precoce è ben tollerato e si traduce in un ricco documento di generatività a doppia voce che rivela un insieme fortemente convergente di temi relativi al significato. Affrontare e risolvere i problemi relativi all'unione, all'autorealizzazione, al declino e all'eventuale morte in vista delle radici di una persona e dei ruoli significativi assunti durante la sua vita può fornire aree fertili per l'intervento terapeutico nelle prime fasi della demenza utilizzando un approccio diadico. Sono necessari futuri studi prospettici che utilizzino metodi misti per valutare l'impatto degli interventi terapeutici basati su Dignity in Care sul benessere mentale e sul carico del caregiver, nonché il suo impatto sulla cura del paziente e sui sintomi comportamentali e psicologici con l'avanzare della demenza.
Improving Dignity of Care in Community-Dwelling Patients with Early-Stage Dementia
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2022
Abstract
Purpose. The aims of this thesis were to study the feasibility of implementation of Dignity Therapy in older persons with early stages of dementia and their chosen caregiver by adapting the dignity therapy question protocol to both patient and caregiver, and to examine the themes emerging from the resultant dual voice generativity documents. Methods. Community-dwelling persons 60 years and older diagnosed with mild dementia and their chosen caregiver underwent dignity therapy separately using a modified version of the dignity therapy question protocol for the caregiver. The resultant edited transcripts were then joined to create a “dual-voice” generativity document which was then presented to the dyad. Clinical measures of dignity, mood, anxiety, caregiver burden, and hopelessness were carried out before and after the therapy for descriptive purposes and to provide clinical context to our qualitative data. The transcripts were analysed using the Interpretative Phenomenological Analysis (IPA) methodology. Results. All 12 participants (6 dyads) included in the study completed the study protocol. The patients had a diagnosis of Mild Cognitive Impairment (33%), Alzheimer’s Dementia (50%), and Parkinson’s Disease Dementia (17%) (mean age +/- SD = 76 +/- 8 years ; male = 67%; mean MoCA +/- SD = 22 +/- 1.3). All patients had at least a secondary school education (33%) and the majority had a tertiary education (67%). All patients were married and all chosen caregivers were their respective spouses. The use of the adapted dignity therapy question protocol with the caregiver allowed for the creation of a dual-voice generativity document and the procedures were well-tolerated and found to be acceptable by all 12 participants using the Dignity Therapy Protocol Feedback Questionnaire (DTPFQ); 67% reported that the dual-voice generativity document would be helpful to their families. Qualitative analysis of patterns of meaning in the data revealed four superordinate themes related to relationships (including togetherness and self-actualisation through the other), their roots (including the social context of their family background, transgenerational influences, and salient interpersonal beginnings and shared memories), respect (both inherent as well as derived from personal and professional roles), and receding health and the dawn of the ending (including concerns related to the future and integrity concerns). There was strong convergence in patients and their caregivers in all four superordinate themes emerging from the analysis. Conclusions. The adaptation of dignity therapy to patient-caregiver dyads in early dementia is well-tolerated and results in a rich dual-voice generativity document revealing a strongly convergent set of themes relating to meaning. Addressing and resolving issues related to togetherness, self-actualisation, decline and eventual demise in light of a person’s roots and significant roles assumed during their life may provide fertile areas for therapeutic intervention in the early stages of dementia using a dyadic approach. Future prospective studies using mixed methods are needed to assess the impact of therapeutic interventions based on Dignity in Care on mental wellbeing and caregiver burden, as well as its impact on patient care and behavioral and psychological symptoms with advancing dementia.| File | Dimensione | Formato | |
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Thesis_FINAL PDF A_Improving Dignity of Care in Community-Dwelling Elderly Patients with Early-Stage Dementia_April 4th 2022.pdf
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Descrizione: Improving Dignity of Care in Community-Dwelling Elderly Patients with Early-Stage Dementia
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Tesi di dottorato
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