Social Lives
Author: Linzi Ryan, Assistant Professor in Department of Design Innovation
Dementia is the greatest global challenge for health and social care in the 21st century with an estimated 47 million individuals diagnosed worldwide, with this number projected to rise to 131.5 million by 2050. The majority of people with dementia live in community settings, supported by family and friends (also known as informal caregivers) who provide care services. As dementia is a progressive disease characterized by cognitive and functional decline, over time people with dementia become increasingly dependent on support services. Research has shown that Community Based Services (CBS), which aim to coordinate the treatment and care of people with dementia, can potentially provide a better quality of life for the care receiver, enable them to remain at home for longer, and be more cost effective then residential care. Despite these benefits of CBS, people with dementia and caregivers use fewer services in comparison to other people in need of care. While societal, cultural, and logistical factors affecting caregiver use of CBS are frequently studied, research of internal emotional barriers, mental limitations created by one’s own self that prevents open communication of thoughts and feelings, and their effect on CBS use is limited.
Research has shown informal caregivers have significant influence on the care-receiver’s ability to access CBS. Therefore, this research has instead focused on the influencing factors on CBS engagement as perceived by caregivers of people with dementia. Through a semi-structured approach, caregivers were interviewed at their place of residence or preferred location (n=20). To qualify for interview participants were required to be the primary care provider for the person with moderate to severe dementia; for caregiver to be their main occupation; and to currently avail/previously availed of CBS. A thematic analysis method (see Table 1) allowed the examination of multiple perspectives of participants, highlight similarities/differences, and generate unanticipated insights. Four themes emerged: Reluctance to question General Practitioner (GP) authority; Embarrassment during level of care requirement reviews; Sense of obligation to provide all care; and Fear of stigma.
Reluctance to question General Medical Practitioners (GP) authority
GPs are recognised gatekeepers for CBS. Due to their long-term relationships, caregivers interviewed had a high level of trust with GPs and heavily relied on them for guidance and information on CBS. As such, GPs have considerable influence on the diagnostic process and care patients receive. Due to the high regard in which GPs are held, many of the caregivers interviewed felt uncomfortable questioning the diagnosis, particularly if symptoms were in the early stages. This delayed diagnosis and prevented caregiver’s use of services, as in Ireland a letter of formal diagnosis is required for CBS eligibility. As a result, additional consultation was only sought when symptoms of dementia were more prevalent and easier to demonstrate.
Embarrassment during requirement review
To determine care requirements, Professional Healthcare Providers perform care needs reviews. Caregivers described the review as a ‘snap-shot’ as care needs are reviewed over a brief period. As a result, care requirements could be skewed if the person-with-dementia was having a particularly lucid or cooperative day. If the person-with-dementia performed tasks more competently/independently within the review session than that reported by the caregiver, the caregiver felt embarrassed at being perceived as misrepresenting the situation and additionally embarrassed if the requested services were refused. As a result, caregivers were reluctant to request increased or additional services until the symptoms worsened and the likelihood of capturing these symptoms by the PHP in the review increased.
Sense of obligation to provide care
In those interviewed, an uneven distribution of care was common, with most of the responsibility falling to a single person, who often had a close relationship with the person-with-dementia (parent, spouse, close friend). This created a strong emotional undertone to the care provision and a sense of obligation to provide all care as they ‘owed’ it to the person-with-dementia to provide ‘perfect’ care. Due to the progressive nature of dementia, the required amount of care increases over time and caregivers progressively struggle to provide the care themselves. As a result of this sense of obligation, it was common for caregivers to only use services at the point of feeling overwhelmed. Consequently, service use was often associated with a sense of guilt.
Fear of stigma
Caregivers were acutely aware of a stigma around dementia. They were often afraid to tell others of the diagnosis for fear of ‘being treated differently’ or ‘what the neighbours might say’. This resulted in a care being sourced from a trusted but limited group (family, close friends) and a reluctance to use CBS, as neighbours would note the PHP attending the home. Additionally, caregivers discussed issues with the person-with-dementia becoming agitated and shouting due to disorientation and being negatively judged because of this behaviour. To avoid stigma, caregivers attempted to keep the diagnosis within their social circles but did not relate this back to the PHPs.
Implications for policy/practice
This research reinforces the need to understand the complex influencing factors on caregivers of people with dementia and their use of CBS. To achieve a higher level of CBS engagement, this complexity must be acknowledged and addressed. PHPs should actively recognise the key challenge of identifying the internal emotional barriers of caregivers and developing a model of care to overcome these barriers. While needs assessments are being widely used in the field of public health, internal embarrassment felt by the caregivers can prevent services from being fully utilised and/or accurately capturing the care needs. A relationship-centred care model, which creates and maintains care routines and professional boundaries but also supports a highly communicative dynamic is required. This model should carefully balance the caregiver-PHP relationship to directly address the emotional barriers to CBS. Staff training to identify the indicative behaviours of internal concerns, embarrassment and sense of obligation should be used to enhance relationship-building and empower the caregiver to externally communicate feelings and concerns. In addition, a relationship model with strong lines of communication can inform/educate caregivers, relieve anxiety, and provide an opportunity to address wider community stigma caused by misinformation. This research, carried out by Dr Linzi Ryan in partnership with the Alzheimer Society of Ireland, the HSE and IT Sligo, as part of a larger body of research to improve user centred dementia care services.