A grounded theory longitudinal study of carers’ experiences of caring for people with dementia

AbstractGlobal policy places emphasis on the implementation and usage of advance care planning (ACP) to inform decision making at the end of life. For people with dementia, where its use is encouraged at the point of diagnosis, utilisation of ACP is relatively poor, particularly in parts of Europe. Using a constructivist grounded theory methodology, this study explores the ways in which co-residing couples considered ACP. Specifically, it seeks to understand the ways in which people with dementia and their long-term co-residing partners consider and plan, or do not plan, for future medical and social care. Sixteen participants were interviewed. They identified the importance of relationships in the process of planning alongside an absence of formal service support and as a result few engaged in ACP. The study recognises the fundamental challenges for couples in being obliged to consider end-of-life issues whilst making efforts to ‘live well’. Importantly, the paper identifies features of the ACP experience of a relational and biographical nature. The paper challenges the relevance of current global policy and practice, concluding that what is evident is a process of ‘emergent planning’ through which couples build upon their knowledge of dementia, their networks and relationships, and a number of ‘tipping points’ leading them to ACP. The relational and collective nature of future planning is also emphasised.

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Family carers' distress and abusive behaviour: longitudinal study

The British Journal of Psychiatry ◽

10.1192/bjp.bp.109.071811 ◽

2010 ◽

Vol 196 (6) ◽

pp. 480-485 ◽

Cited By ~ 46

Author(s):

Claudia Cooper ◽

Martin Blanchard ◽

Amber Selwood ◽

Zuzana Walker ◽

Gill Livingston

Keyword(s):

Longitudinal Study ◽

Elder Abuse ◽

Anxiety And Depression ◽

Psychological Interventions ◽

Family Carers ◽

People With Dementia ◽

Specialist Services ◽

The Family ◽

Abusive Behaviour ◽

Conflict Tactics

BackgroundA third of family carers of people with dementia report abusive behaviour towards the person for whom they are caring. This is the first longitudinal study to investigate such behaviour.AimsTo test our hypotheses that carers' reports of abusive behaviour would increase over time, and that change in abuse scores would be predicted by change in anxiety and depression scores.MethodIn total, 131 (71.6%) of the family/friend dementia carers consecutively recruited from new referrals to Essex and London community mental health teams who were interviewed at baseline, completed the revised Modified Conflict Tactics Scale to measure abuse 1 year later.ResultsSixty-three (48.1%) of the carers reported any abusive behaviour at baseline compared with 81 (61.8%) a year later (χ2 = 6.9, P = 0.009). An increase in abuse scores was predicted by an increase in anxiety and depressive symptoms (respectively ß = 0.32, t = 3.9, P<0.001 and ß = 0.24, t = 2.9, P = 0.005), and by less domiciliary care at baseline (ß = –0.18, t =–2.2, P = 0.031).ConclusionsMost abusive behaviour reported by carers at baseline persisted or worsened in the following year, despite contact with specialist services. We suggest that trials of psychological interventions shown to reduce anxiety and depression in the carers of people with dementia are needed to determine whether they also reduce elder abuse, and can be delivered cost-effectively within the National Health Service (NHS).

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How accessible are grocery shops for people with dementia? A qualitative study using photo documentation and focus group interviews

Dementia ◽

10.1177/1471301218808591 ◽

2018 ◽

Vol 19 (6) ◽

pp. 1872-1888 ◽

Cited By ~ 3

Author(s):

Anna Brorsson ◽

Annika Öhman ◽

Stefan Lundberg ◽

Malcolm P Cutchin ◽

Louise Nygård

Keyword(s):

Grounded Theory ◽

Focus Group ◽

Qualitative Study ◽

Grocery Shopping ◽

Theory Approach ◽

Focus Group Interviews ◽

People With Dementia ◽

Photo Documentation ◽

Group Interviews ◽

Grounded Theory Approach

Background People with dementia who live in ordinary housing need to perform activities outside the home such as visiting friends, talking walks and doing grocery shopping. This article identifies and examines characteristics that may influence accessibility in the space of a grocery shop as perceived by people with dementia. Methods This is a qualitative study with a grounded theory approach. The data collection was done with two different methods. It started with photo documentation and continued with focus group interviews in combination with photo elicitation. Data from both photo documentation and focus groups were analysed according to a grounded theory approach. Results The categories “illogical arrangement”, “overload of products, information and people”, “visual illusions” and “intrusive auditory stimuli” showed characteristics in the grocery shop that influenced how accessible and usable the informants experienced a shop to be. Furthermore, personal capacities in relation to the specific characteristics of the grocery shop space had an influence on how accessible and usable the informants experienced the grocery shop to be. Capacities to find, stay focused and concentrated, meet stress, remember, interpret and discriminate sensory impressions through hearing and sight came to the fore as important. Conclusions Characteristics of both the shop and the person need to be taken into account when supporting people with dementia in grocery shopping.

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TRATAMIENTO DE LA FRAGILIDAD Y APATÍA A TRAVÉS DE ACTIVIDADES PSICOMOTRICES EN LA ENFERMEDAD DE ALZHEIMER

International Journal of Developmental and Educational Psychology Revista INFAD de psicología ◽

10.17060/ijodaep.2016.n2.v1.561 ◽

2016 ◽

Vol 1 (2) ◽

pp. 103

Author(s):

Claudia Guillen-Betancort ◽

Guillermo Da Silva-Domingo ◽

Josefa González Santos ◽

Raquel De la Fuente-Anuncibay ◽

Álvaro Da Silva González ◽

...

Keyword(s):

Longitudinal Study ◽

Occupational Therapy ◽

Elderly People ◽

Disease Type ◽

Initial Assessment ◽

Spearman Correlation ◽

Vital Functions ◽

People With Dementia ◽

Relationship Of ◽

Therapy Treatment

Abstract.Objective: To implement an Occupational Therapy treatment in elderly people with dementia and frailtyMethod: A longitudinal study of a sample of 23 users, 14 women and 9 men aged between 71 and 92 is performed, the average age 84.66 years, users of a residence, presenting frailty and dementia. Carried out an initial assessment and final tests with Short Physical Performance Battery (SPPB) and Dementia Apathy Interview and Rating (DAIR), participants attend occupational therapy sessions.Statistical analysis: it was performed nonparametric Wilcoxon, Spearman correlation and Mann Whitney U test.Results: We observed that the levels of fragility do not improve, there is no relationship of age with frailty, the level of apathy does not decrease with the intervention, there is no difference in the score of apathy or fragility by sex.Conclusions: the results indicate a maintenance of vital functions on both scales, which can be considered beneficial when dealing with degenerative processes.Keywords: fragility, apathy, dementia of Alzheimer’s disease type, psychomotor activities.Resumen.Objetivo: Implementar un tratamiento de Terapia Ocupacional en personas mayores con demencia y fragilidadMétodo: Se realiza un estudio longitudinal sobre una muestra de 23 usuarios, 14 mujeres y 9 hombres con edades comprendidas entre 71 y 92, siendo la edad media 84.66 años, usuarios de una residencia, que presentan fragilidad y demencia. Se lleva a cabo una evaluación inicial y otra final con las pruebas Batería Corta del Desempeño Físico (SPPB) y Dementia Apathy Interview and Rating (DAIR), los participantes asisten a sesiones de Terapia Ocupacional.Análisis estadístico: se llevan a cabo pruebas no paramétricas de Wilcoxon, Correlación de Spearman y U de Mann Whitney.Resultados: se observa que los niveles de fragilidad no mejoran, que no hay relación de la edad con la fragilidad, el nivel de apatía no disminuye con la intervención, no existen diferencias en la puntuación de apatía ni fragilidad según el sexo.Conclusiones. los resultados indican un mantenimiento de las funciones vitales en ambas escalas, lo que se puede considerar beneficioso al tratarse de procesos degenerativos.Palabras clave: fragilidad, apatía, demencia tipo Alzhéimer, actividades psicomotrices.

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Managing Shame: A Grounded Theory of How Stigma Manifests in Families Living With Dementia

Journal of the American Psychiatric Nurses Association ◽

10.1177/1078390319832965 ◽

2019 ◽

Vol 26 (2) ◽

pp. 181-188 ◽

Cited By ~ 3

Author(s):

Ruth Palan Lopez ◽

Karen M. Rose ◽

Lauren Kenney ◽

Victoria Sanborn ◽

Jennifer Duncan Davis

Keyword(s):

Grounded Theory ◽

Family Caregivers ◽

Underlying Mechanism ◽

The United States ◽

Theory Approach ◽

Brain Disorders ◽

Supportive Services ◽

People With Dementia ◽

Related Stigma ◽

Grounded Theory Approach

BACKGROUND: Alzheimer’s disease and related dementias are irreversible, progressive brain disorders that slowly destroy memory, language, problem solving, and cognition. In the United States, dementia is the fifth leading cause of death for people age 65 years and older. Early diagnosis could have important benefits stigma related to dementia remains a significant impediment to diagnosis, treatment, and accessing services. While a growing body of research documents the existence and negative outcomes of stigma, less is known about how dementia-related stigma produces ill effects. AIMS: The purpose of this study was to use qualitative methods to explore how stigma manifests within families from the perspective of family caregivers of people with dementia. METHOD: Using a grounded theory approach, we interviewed 13 family caregivers of people with dementia. RESULTS: Shame emerged as the central theme experienced by family caregivers of people with dementia. Attempting to manage shame, produced three categories of responses: (1) silencing and not calling attention to the symptoms, (2) concealing the diagnosis, and (3) shunning and avoiding contact. CONCLUSIONS: Shame may be an underlying mechanism by which stigma is enacted and perpetuated, resulting in caregivers’ isolation and delay in access to diagnostic and supportive services. Efforts to dispel the misconception that dementia is a shameful disease may be one way to diminish stigma.

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