Posted: January 5th, 2023
To research how persons with dementia are affected psychologically.
Dementia is an umbrella term used to describe a range of progressive neurological disorders that affect memory, thinking, and behavior. Some of the most common types of dementia include Alzheimer’s disease, vascular dementia, dementia with Lewy bodies, and frontotemporal dementia. While dementia primarily impacts cognitive abilities, it also takes a significant psychological toll. The psychological effects of dementia can vary depending on the type and stage of the disease but often include changes in mood, personality, and behavior. Understanding how dementia affects people psychologically is important for providing appropriate care and support.
Effects on Mood
Mood changes are very common in dementia and can manifest in different ways. For example, depression is quite prevalent in people with dementia, with estimates suggesting that around 30-40% of individuals experience clinical depression at some point during the disease process (Alzheimer’s Association, 2022). Depression in dementia is linked to changes in brain chemistry and structure caused by the underlying neurological degeneration. Symptoms of depression include feelings of sadness, hopelessness, loss of interest in activities, changes in appetite or sleep, lack of energy, difficulty concentrating, and thoughts of death or suicide.
Anxiety is another mood state that frequently accompanies dementia. Around 20-30% of people with dementia experience clinically significant anxiety (Alzheimer’s Society, 2023). Anxiety in dementia may stem from feelings of loss of independence, control, and self as cognitive abilities decline. Physical symptoms of anxiety like restlessness, irritability, and sleep disturbances are common. Individuals with dementia may also experience anxiety related to specific triggers in their environment without fully understanding the cause of their distress.
Apathy, or a lack of motivation and interest, is another psychological effect seen in around 40-50% of people with dementia (Alzheimer’s Association, 2022). Apathy in dementia is linked to changes in brain regions involved in motivation and reward processing. Individuals may lose interest in social interactions, hobbies, and daily activities as a result. Apathy can be distressing for caregivers to manage and is associated with worse functional outcomes.
Changes in Personality and Behavior
Dementia often brings about changes in personality and behavior as it progresses. Individuals may exhibit behaviors that are disruptive, inappropriate, repetitive, or even aggressive. These behavioral and psychological symptoms of dementia (BPSD) occur in over 90% of people with Alzheimer’s disease or other dementias at some point (Alzheimer’s Society, 2023).
Common behavioral changes include agitation, wandering, repetitive questioning, shadowing caregivers, hoarding, and sundowning (increased confusion or restlessness in the late afternoon or evening). Personality changes may involve increased irritability, emotional lability, lack of social awareness or empathy, paranoia, and delusions. Such behaviors are thought to stem from underlying brain changes, unmet needs, and impaired communication abilities in dementia. They can be distressing for both the individual and their caregivers.
Psychological effects of specific dementia types
While dementia affects cognition and behavior broadly, different types of dementia may produce somewhat distinct psychological profiles. For example:
Alzheimer’s disease is associated with early changes in mood, personality, and behavior as memory loss progresses. Individuals may become withdrawn, suspicious, fearful, or experience personality distortions (Alzheimer’s Society, 2023).
Vascular dementia often involves more pronounced mood changes like depression, anxiety, and apathy due to its vascular origins impacting brain regions involved in emotion (Alzheimer’s Society, 2023).
Dementia with Lewy bodies commonly brings visual hallucinations, delusions, and fluctuating cognition/alertness linked to its underlying pathology (Alzheimer’s Society, 2023).
Frontotemporal dementia tends to produce prominent changes in behavior, inhibition, empathy, and social conduct early on due to frontal/temporal lobe atrophy (Rohrer & Warren, 2011).
Understanding the psychological profile of a person’s particular dementia can help guide their care and management approach. However, there is also significant individual variability in symptom presentation.
Psychological Impact on Individuals and Caregivers
The psychological toll of dementia extends beyond just the individual with the disease. Family members and unpaid caregivers are also at high risk for mental health issues like depression, anxiety, and stress due to the physical, emotional, and financial strain of caregiving (Alzheimer’s Association, 2022). An estimated one-third of dementia caregivers experience clinical depression.
For the individual with dementia, psychological symptoms can negatively impact their quality of life, functional abilities, and risk of nursing home placement (Alzheimer’s Association, 2022). Untreated BPSD may lead to excessive disability, caregiver distress, early institutionalization, and increased health service costs. However, appropriate management of psychological symptoms in dementia through medication, behavioral interventions, environmental modifications, and caregiver education/support can help optimize outcomes.
Caregiver Interventions and Support Programs
Several interventions have been developed to help support caregivers of people with dementia and mitigate the psychological toll. Support groups, counseling or therapy, respite care programs, and education about dementia and coping strategies can all help reduce caregiver stress, depression, and burden (Alzheimer’s Association, 2022).
One systematic review of 39 randomized controlled trials found multicomponent psychosocial interventions for caregivers that included skills training, support groups, and counseling significantly reduced caregiver depression and burden compared to usual care (Losada et al., 2015). Technology-based interventions are also emerging, such as videoconferencing support groups, online psychoeducation modules, and smartphone apps with coping strategies and reminders (Gitlin & Hodgson, 2016).
Multicomponent interventions that address both caregiver psychosocial needs as well as providing practical assistance through respite care may confer the greatest benefits. For example, the New York University Caregiver Intervention reduced caregiver depression, anxiety, and burden while improving patients’ behavioral and psychological symptoms through individual counseling, support groups, and in-home respite care (Mittelman et al., 2006). Such holistic programs demonstrate the importance of meeting both the emotional and tangible needs of dementia caregivers.
Conclusion
In summary, dementia takes a profound psychological toll that extends beyond just cognitive impairment. Mood changes, behavioral disturbances, and alterations in personality are common and distressing features of the disease that impact both individuals and their caregivers. Understanding how dementia affects people psychologically can help guide more compassionate and effective care, support, and treatment approaches over the course of the illness. With a holistic view of the mental health dimensions of dementia, individuals can experience improved well-being and quality of life even in the face of progressive cognitive decline. Caregiver interventions that provide both psychosocial support and practical assistance show the most promise in reducing caregiver burden and improving patient outcomes.
References:
Alzheimer’s Association. (2022). 2022 Alzheimer’s disease facts and figures. Alzheimer’s & Dementia, 18(4), 700-789. https://doi.org/10.1002/alz.12638
Alzheimer’s Society. (2023). Types of dementia. https://www.alzheimers.org.uk/about-dementia/types-dementia
Gitlin, L. N., & Hodgson, N. (2016). Caregivers as therapeutic agents in dementia care: The evidence-base for interventions supporting their role. In Care for the family caregiver (pp. 85-103). Springer, Cham.
Losada, A., Márquez-González, M., Romero-Moreno, R., & López, J. (2015). Development and validation of a therapeutic intervention for dementia caregivers. American Journal of Alzheimer’s Disease & Other Dementias, 30(6), 597-608.
Mittelman, M. S., Haley, W. E., Clay, O. J., & Roth, D. L. (2006). Improving caregiver well-being delays nursing home placement of patients with Alzheimer disease. Neurology, 67(9), 1592-1599.
Rohrer, J. D., & Warren, J. D. (2011). Phenotypic signatures of genetic frontotemporal dementia. Current opinion in neurology, 24(6), 542–549. https://doi.org/10.1097/WCO.0b013e32834c3c5b