Elsevier

Social Science & Medicine

Volume 102, February 2014, Pages 111-118
Social Science & Medicine

Informal caregivers' hopes and expectations of a referral to a memory clinic

https://doi.org/10.1016/j.socscimed.2013.11.023Get rights and content

Highlights

  • Families reported ‘getting stuck’ and having to ‘take charge’ in the process of seeking an assessment for memory concerns.

  • Caregivers' ‘need to know’ drove the help-seeking process.

  • Caregivers expected diagnosis to include ‘naming it,’ ‘accessing treatment,’ ‘knowing what to expect,’ and ‘guidance.’

  • Six months following diagnosis, the main theme was ‘acceptance and moving forward.’

  • Caregivers reported that the diagnosis brought relief, validation, and improved access to services.

Abstract

Although only 20–50% of individuals with dementia are diagnosed, early diagnosis enables patients and families to access interventions and services, and plan for the future. The current study explored the experiences of rural family caregivers in the period leading up to a diagnostic assessment at a Canadian memory clinic, their hopes and expectations of the assessment, and their experiences in the six months following diagnosis. Using a longitudinal, retrospective and prospective qualitative research design, caregivers of 30 patients referred to the clinic were interviewed during the diagnostic assessment process and again six months after the diagnosis. Most caregivers reported first noticing symptoms two years prior to diagnosis. The pre-diagnostic interviews revealed a prevalent ‘need to know’ among caregivers that drove the help-seeking process. Caregivers hoped that the diagnosis would have the benefits of ‘naming it,’ ‘accessing treatment,’ ‘knowing what to expect,’ and ‘receiving guidance.’ When asked six months later about the impact of the diagnosis, the main theme was ‘acceptance and moving forward.’ Caregivers reported that the diagnosis provided ‘relief,’ ‘validation,’ and ‘improved access to services.’ These findings can inform care practices of primary health care providers who represent the first point of contact regarding expectations and experiences of dementia-related diagnoses.

Introduction

Dementia is a challenge for families worldwide, with an estimated 35.6 million people living with dementia in 2010 (Prince et al., 2013). A five-country survey revealed that 30% of respondents had someone in their family with a diagnosis of Alzheimer's Disease (AD) (Alzheimer Europe, 2011). In Canada, 7% of those over the age of 60 years and 49% over age 90 have dementia, and this prevalence is projected to increase by 2.3 times over the next 20 years (Alzheimer Society Canada, 2010). In Canada and internationally, rural areas are aging faster than urban areas (CIHI, 2011, NACRHHS, 2008), leading to high proportions of older people and thus more people at risk for dementia. Fewer than half of all dementia cases have documented diagnoses (WHO, 2012). For those diagnosed (only 25–50% in high income countries), dementia is detected too late for interventions to be beneficial (WHO, 2012). Without a diagnosis, people go without treatment, care, and organized support (Koch and Iliffe, 2010, Pratt et al., 2006, Prince et al., 2011).

Studies of the pathway to diagnosis of dementia have identified caregivers as crucial. Leung et al. (2011) found that caregivers initially encouraged patients to seek help, but over time actively pursued a diagnosis. Although shorter pathways to diagnosis occurred when caregivers recognized symptoms and sought help (Schrauf & Iris, 2011), attaining a diagnosis required considerable diligence by caregivers and marked delays were common (Teel & Carson, 2003). Time from first symptom recognition to diagnosis of dementia averaged 3.1 years, with delays occurring before and after seeing the first health professional (Speechly, Bridges-Webb, & Passmore, 2008). In Ontario, caregivers identified the need for specialist services and more training of health care professionals to improve early assessment and diagnosis (Dupuis & Smale, 2004).

Patients and caregivers who live in rural areas experience additional barriers (Bradford, Kunik, Schulz, Williams, & Singh, 2009), due in part to challenges of rural health delivery, including long distances, lower population density, and widely dispersed populations (White, 2013). Indeed, a systematic review of factors contributing to missed and delayed diagnosis of dementia in rural settings identified problems related to providers, patients, caregivers, and the health system (Bradford et al., 2009). Access to diagnostic and post-diagnostic services is especially limited in rural areas, as is sufficient training of primary health care professionals to diagnose and manage dementia (Szymczynska, Innes, Mason, & Stark, 2011). A systematic review of informal caregiving in rural settings (Innes, Morgan, & Kosteniuk, 2011) found limited research on caregivers' experiences of dementia and insufficient information available to develop rural dementia care services that support the person with dementia and their family caregivers. Therefore, the purpose of this study was to explore for the first time the experiences of rural informal caregivers in the period leading up to a diagnostic assessment at a memory clinic, their hopes and expectations of the assessment, and their experiences in the six months following assessment and diagnosis.

Section snippets

Methods

This study used a longitudinal, retrospective and prospective qualitative research design in which in-depth interviews were conducted at baseline assessment and six months later. Data were collected between 2010 and 2012. Ethical approval was granted from the University of Saskatchewan Behavioral Research Ethics Board.

Findings

Although four caregivers noticed symptoms less than one year prior to the assessment, for the majority of patients (20/30) their caregivers reported first noticing symptoms two years earlier, with the remaining caregivers reporting three to five years. This period included wait times for the RRMC, which averaged 11 months. Most patients were referred by their primary care provider, although one patient with FTD was referred by a specialist for a second opinion. Five patients were taking Aricept

The impact of knowing at six months

Six months post-diagnosis, caregivers displayed a reduced sense of urgency and stress compared to the initial interviews, regardless of the diagnosis. Receiving a diagnosis seemed to be the climax of their help-seeking process. Caregivers were interviewed just prior to receiving the diagnosis on clinic day, and then six months later; consequently, we did not capture their immediate reaction to the diagnosis, which may have changed over time. At six months, acceptance of the diagnosis and moving

Discussion

While some caregivers reported a “smooth pathway” to diagnosis, many others reported a difficult and complex journey to achieve a diagnosis for their family member. Their experiences were more like the “fragmented” and “dead-end” pathways described by Hinton, Franz, and Friend (2004). By the time caregivers and patients in our study arrived at the clinic, it had typically been approximately two years since they first noticed signs and symptoms of cognitive difficulties in their family member,

Limitations

Given the importance of patients' experiences in the dementia journey, a limitation of this study is the exclusive focus on caregivers' perspectives. Future research is clearly needed to determine the experience of patients in the diagnostic help-seeking process, assessment process, and the meaning of the communicated diagnosis for them. The current study used a convenience sampling method and is a mixed sample in terms of type of dementia and caregiver–patient relationship. However, the fact

Conclusion

The absence of a timely diagnosis for dementia can have deleterious effects on the emotional well-being of patients and caregivers and can create a missed opportunity to obtain therapeutic treatments and access to support services (Prince et al., 2011, WHO, 2012). This study highlights the value that a sought-after diagnosis can bring about in the lives of caregivers and patients. These benefits may not always be obvious to care practitioners. Physicians and other primary health care providers

Acknowledgments

Support for this research was provided to D. Morgan through an Applied Chair in Health Services and Policy Research funded by the Canadian Institutes of Health Research and the Saskatchewan Health Research Foundation, and CIHR Centre for Research Development Grant from the Canadian Centre for Health and Safety in Agriculture.

References (35)

  • A. Innes et al.

    Dementia care in rural and remote settings: a systematic review of informal/family caregiving

    Maturitas

    (2011)
  • Alzheimer Europe

    The value of knowing: Five-country Alzheimer's Disease survey

    (2011)
  • Alzheimer Society of Canada

    Rising tide: The impact of dementia on Canadian society

    (2010)
  • R. Blieszner et al.

    Dimensions of ambiguous loss in couples coping with mild cognitive impairment

    Family Relations

    (2007)
  • A. Bradford et al.

    Missed and delayed diagnosis of dementia in primary care: prevalence and contributing factors

    Alzheimer Disease and Associated Disorders

    (2009)
  • S.M. Cahill et al.

    “I was worried coming in because I don't really know why it was arranged”: the subjective experience of new patients and their primary caregivers attending a memory clinic

    Dementia

    (2008)
  • Canadian Institute for Health Information. (CIHI)

    Health care in Canada, 2011: A focus on seniors and aging

    (2011)
  • K. Charmaz

    Constructing grounded theory: A practical guide through qualitative analysis

    (2006)
  • Department of Health (England)

    Living well with dementia: A national dementia strategy

    (2009)
  • S. Dupuis et al.

    In their own voices: Dementia caregivers identify the issues. Stage 2: The focus groups

    (2004)
  • D. Elliot

    The age distribution of the Saskatchewan population

    Sask Trends Monitor

    (2012)
  • A. Espinosa et al.

    A longitudinal follow-up of 550 mild cognitive impairment patients: evidence for large conversion to dementia rates and detection of major risk factors involved

    Journal of Alzheimer's Disease

    (2013)
  • Government of Saskatchewan

    Saskatchewan Fact Sheet July 2012

    (2012)
  • L. Hinton et al.

    Pathways to dementia diagnosis: evidence for cross-ethnic differences

    Alzheimer Disease and Associated Disorders

    (2004)
  • D. Knopman et al.

    Patterns of care in the early stages of Alzheimer's disease: Impediments to timely diagnosis

    Journal of the American Geriatrics Society

    (2000)
  • T. Koch et al.

    Rapid appraisal of barriers to the diagnosis and management of patients with dementia in primary care: a systematic review

    BMC Family Practice

    (2010)
  • K. Leung et al.

    Pathways to diagnosis: exploring the experiences of problem recognition and obtaining a dementia diagnosis among Anglo-Canadians

    Health and Social Care in the Community

    (2011)
  • Cited by (0)

    View full text