The impact of early dementia diagnosis and intervention on informal caregivers

Highlights

• An early dementia diagnosis offers caregivers the opportunity to advance the process of adaptation to the caregiver role.

• Caregivers that are able to adapt to the changes that characterize dementia, feel more competent to care and experience less psychological problems.

• Multicomponent caregiver interventions in the mild to moderate dementia stages are effective to improve caregiver well-being and delay institutionalization.

• Offering caregiver interventions in the predementia stage asks for different approaches with different tasks to cope with.

Abstract

In the absence of disease modifying therapies for dementia, the question rises what the benefits are of an early dementia diagnosis for patients and their caregivers. This paper reviews the caregiver perspective in dementia and addresses the question what the consequences are of promoting earlier dementia diagnosis.

An early diagnosis offers caregivers the opportunity to advance the process of adaptation to the caregiver role. Caregivers that are better able to adapt to the changes that characterize dementia, feel more competent to care and experience less psychological problems. However, drawbacks of an early diagnosis may outweigh the benefits if people are left with a diagnosis but little support. There is convincing evidence that multicomponent caregiver interventions in the mild to moderate dementia stages are effective to improve caregiver well-being and delay institutionalization. However, there still exist a gap between the improved possibilities to diagnose people in the predementia stage versus the scarce knowledge on intervention effects in this very early stage. This stresses the urgent need for more research on early caregiver interventions that enhance role adaptation and that include long-term follow-up and cost-effectiveness evaluation. Early interventions may help caregivers in anticipating and accepting the future care role and transitions, with the increased possibility that caregivers can still involve the patient in the decision making process. As levels of stress and burden are still low in the predementia stage it provides excellent opportunities to empower the resources of caregivers.

Introduction

The rising prevalence of people with dementia worldwide (Wimo and Prince, 2010) will make an appeal to many new families to engage in care for a person with dementia. The terms ‘primary caregiver’ or ‘informal caregiver’ have been used to denote a relative who takes on the principal role of taking care for the dementia patient at home. The person most likely to take on the caregiving role will be the spouse. If the person with dementia is widowed or not in a relationship, then an adult child will most likely become the caregiver. In cases where there is no family member, a friend or neighbor may provide care (Quinn et al., 2010). Informal caregivers provide care because someone needs help, out of love or out of a sense of moral duty. This is often not a conscious choice but a gradual adaptation to changes in their family member. The relationship between caregiver and the person with dementia can affect whether caregiving is perceived as natural or as an obligation. Informal caregivers often provide years of extensive care and must be able to adapt to a continuously changing and demanding situation. This requires a wide range of skills, such as: supervising or taking over daily tasks, managing cognitive problems, interpreting and managing behavioral changes, adapting to new social and economic circumstances, coping with relational and emotional consequences, and participating in care and treatment decisions.

Informal caregivers can experience a subtle onset and gradual increase of caregiving tasks due to a slow progression of the disease, even long before receiving a dementia diagnosis. A study conducted by van Vliet et al. (2012) showed that the average duration between caregiver reports of symptom onset and dementia diagnosis was almost 3 years in late onset dementia and even longer (4.4 years) in young onset dementia. Promoting an early diagnosis is widely advocated and has priority in several recently launched national dementia strategies, such as the National Dementia Strategy for the UK, the French Plan Alzheimer, and the US National Alzheimer's Project Act.

New biomarkers are playing an important role in the improvement of early detection and diagnosis of Alzheimer's disease (AD). Biomarkers are used to detect manifestations of AD in the very early phase, characterized by limited cognitive symptoms and preserved functional abilities, also referred to as the Mild Cognitive Impairment (MCI) phase. This biomarker development and acknowledgment of the very early phase of AD offers new important opportunities for early detection, diagnosis and interventions. But in the absence of disease modifying therapies for AD, the question rises what the benefits are of an early diagnosis and if these outweigh the possible drawbacks for patients and their caregivers. This paper will focus on the caregiver perspective in addressing the question what the consequences are of promoting earlier diagnosis in dementia in terms of benefits, drawbacks and opportunities for interventions. The importance and consequences of informal care will be reviewed to guide the discussion.