The impact of early dementia diagnosis and intervention on informal 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.
Section snippets
Economic importance of informal care
Of the 35.6 million people living with dementia worldwide, the majority is living at home and cared for by a family member. In the future informal care will be increasingly important as the number of people with dementia will rise to 65.7 million by 2030 and 115.4 million by 2050 together with a decrease of the working population (Wimo and Prince, 2010). The economic impact of dementia is enormous. Globally, costs for people with dementia amount to more than 1% of gross domestic product (GDP);
What is meant by ‘early diagnosis’?
The term ‘early diagnosis’ can be confusing as it is used to address different stages in the disease process. Roughly, the concept of an early diagnosis can pertain to two different situations: (1) predementia diagnosis of AD (or other neurodegenerative disorders), and (2) early diagnosis of dementia. These two situations imply totally different approaches with respect to the tasks that individuals need to cope with and the health care policy implications.
For research purposes, a third option
The pathway to dementia diagnosis
Reflection on the consequences for caregivers of advancing an early diagnosis requires insight in the caregiver experiences in the pre-diagnostic period. Family members most often notice the first symptoms of dementia, as patients can be unaware of their memory impairment (Lopez et al., 1994). Recognition of the problem by family members is triggered by behavioral changes rather than by cognitive or functional impairment (Eustace et al., 2007). Although changes and difficulties in daily
Benefits of early diagnosis
Caregivers may experience the disclosure of the dementia diagnosis as a confirmation of suspicions (Derksen et al., 2005) or even as a relief (van Vliet et al., 2011). This highlights the distress and struggle caregivers may endure before diagnosis if they already have experienced changes in the patient for a considerable time period. A delay in diagnosis can prolong feelings of uncertainty and misunderstanding. The latter is especially the case for changes in behavior, as they are often
Drawbacks of early diagnosis
Fear of stigma is one of the reasons why people delay to seek a diagnosis. Stigma is still pervasive in dementia and can be defined as a process of disqualification whereby a ‘normal’ person is reduced to a person with whom something is wrong. According to Goffman (1963) different types of stigma can be distinguished. One form relates to moral incapacities of a person or the view that an individual has personal ‘blemishes’ that affects their social identity. This type of stigma is expressed in
Caregiver interventions in early stage dementia
An early diagnosis may do more harm than good if no effective interventions are available. Early timing may also be crucial in maximizing the impact of the intervention (Woods, 2003). Biomarker development and acknowledgment of the preclinical dementia phase offers opportunities to advance adaptation to the caregiver role and prevent high levels of burden and patient institutionalization in the dementia stage. Yet few caregiver programs are designed specifically for the MCI phase or preclinical
Conclusion
The value of an early diagnosis of dementia, in the absence of disease modifying therapies, lies for caregivers in the opportunity to advance the process of recognition and adaptation. However, the drawbacks of an early diagnosis may outweigh the benefits if people are left with a diagnosis but little support in this process (Iliffe and Manthorpe, 2004). At present, there is convincing evidence that multicomponent caregiver interventions in the mild to moderate dementia stages can delay
References (92)
- et al.
Chronic stress in caregivers of dementia patients is associated with reduced lymphocyte sensitivity to glucocorticoids
Journal of Neuroimmunology
(2000) - et al.
Revising the definition of Alzheimer's disease: a new lexicon
Lancet Neurology
(2010) - et al.
Challenges associated with transition to caregiver role following diagnostic disclosure of Alzheimer disease: a descriptive study
International Journal of Nursing Studies
(2011) - et al.
Hypothetical model of dynamic biomarkers of the Alzheimer's pathological cascade
Lancet Neurology
(2010) - et al.
Incidence of depression and anxiety in the spouses of patients with dementia: a naturalistic cohort study of recorded morbidity with a 6-year follow-up
American Journal of Geriatric Psychiatry
(2010) - et al.
Anxiety and depression in family caregivers of people with Alzheimer disease: the LASER-AD study
American Journal of Geriatric Psychiatry
(2005) - et al.
Prevalence of neuropsychiatric symptoms in CIND and its subtypes: the Cache County Study
American Journal of Geriatric Psychiatry
(2012) - et al.
Chronic stress in elderly carers of dementia patients and antibody response to influenza vaccination
Lancet
(1999) - et al.
Rational decision-making about treatment and care in dementia: a contradiction in terms?
Patient Education and Counseling
(2012) - et al.
Profiles in Caregiving; The Unexpected Career
(1995)
Social supports and social relationships
Transitions into caring: gender, life course and the care of the elderly
Enhancing the quality of life of dementia caregivers from different ethnic or racial groups: a randomized, controlled trial
Annals of Internal Medicine
Cognitive training for persons with mild cognitive impairment
International Psychogeriatrics
Care partner responses to the onset of mild cognitive impairment
Gerontologist
Burden of caregiving: evidence of objective burden, subjective burden, and quality of life impacts on informal caregivers of patients with rheumatoid arthritis
Arthritis and Rheumatism
Development of a conceptual framework of positive aspects of caregiving in dementia
Journal of Applied Gerontology
Dementia early diagnosis: triggers, supports and constraints affecting the decision to engage with the health care system
Aging and Mental Health
Impediments to timely diagnosis of Alzheimer's disease in African Americans
Journal of the American Geriatrics Society
Attitudes toward the diagnosis and disclosure of dementia among family caregivers and primary care physicians
Gerontologist
Type of social support and specific stress: toward a theory of optimal matching
Biochemical stress of caring
Psychological Medicine
The impact of dementia and mild memory impairment (MMI) on intimacy and sexuality in spousal relationships
International Psychogeriatrics
The primary care diagnosis of dementia in Europe: an analysis using multidisciplinary, multinational expert groups
Aging and Mental Health
Behavioural Problems in Dementia: Caregiver Issues
Cognitive functioning in spousal caregivers of dementia patients: findings from the prospective MAASBED study
Age and Ageing
Behavioral problems in dementia patients and salivary cortisol patterns in caregivers
Journal of Neuropsychiatry and Clinical Neurosciences
Impact of behavioural problems on spousal caregivers: a comparison between Alzheimer's disease and frontotemporal dementia
Dementia and Geriatric Cognitive Disorders
A prospective study of the effects of behavioral symptoms on the institutionalization of patients with dementia
International Psychogeriatrics
Behavioural disturbances in dementia patients and quality of the marital relationship
International Journal of Geriatric Psychiatry
Do caregiver management strategies influence patient behaviour in dementia?
International Journal of Geriatric Psychiatry
The impact of diagnostic disclosure in dementia: a qualitative case analysis
International Psychogeriatrics
Determinants of carer stress in Alzheimer's disease
International Journal of Geriatric Psychiatry
Behavioural disturbance triggers recognition of dementia by family informants
International Journal of Geriatric Psychiatry
Caregiving burden and psychiatric morbidity in spouses of persons with mild cognitive impairment
International Journal of Geriatric Psychiatry
Marital quality in the context of mild cognitive impairment
Western Journal of Nursing Research
Early community-based service utilization and its effects on institutionalization in dementia caregiving
Gerontologist
Can counseling and support reduce burden and depressive symptoms in caregivers of people with Alzheimer's disease during the transition to institutionalization? Results from the New York University caregiver intervention study
Journal of the American Geriatrics Society
Stigma: Notes on the Management of Spoiled Identity
Post-traumatic growth and life threatening physical illness: a systematic review of the qualitative literature
British Journal of Health Psychology
Predictors of institutionalization for people with dementia living at home with a carer
International Journal of Geriatric Psychiatry
Reciprocity and affection: past influences on current caregiving
Journal of Gerontology and Social Work
The hazards of early recognition of dementia: a risk assessment
Aging and Mental Health
Primary care and dementia: 1. Diagnosis, screening and disclosure
International Journal of Geriatric Psychiatry
Development and Evaluation of a Psychological Intervention for Patients with Mild Cognitive Impairment, and their Significant Others
Group therapy for patients with mild cognitive impairment and their significant others: results of a waiting-list controlled trial
Gerontology
Cited by (162)
Individualized coordination and empowerment for care partners of persons with dementia (ICECaP): Study rationale and protocol
2024, Contemporary Clinical Trials'We're happy as we are': The experience of living with possible undiagnosed dementia
2023, Ageing and Society