Caregiver Insights Into the Burden and Consequences of Neuropsychiatric Symptoms on Patients With Dementia and Their Caregivers
The Burden of Dementia Typically Falls on Family Caregivers
In dementia, patients require assistance and care, and nearly 70% of dementia patients are cared for by their spouse or child. Importantly, compared to older adults without dementia, a higher proportion of the caregivers of dementia patients are their children.1
I support my dad as best as I can, especially during times when my dad isn’t really sure what to do. For example, my mom thinks my dad is someone else. I help to talk to my mom and ease her anxiety. I also take my mom a few times a week to help give my dad some time to breathe and reset.
– Kristy
The Incidence and Severity of Neuropsychiatric Symptoms Correlates With Measures of Caregiver Burden, Depression, and Distress
The burden associated with psychiatric and behavioral symptoms can be high. In a study of people with Alzheimer’s disease, measures of neuropsychiatric symptoms, including the NPI, were significantly correlated with caregiver burden, depression, and distress.3
N=421 ambulatory outpatients diagnosed with Alzheimer’s disease and their caregivers
As a caregiver, it is scary. You feel alone and lost with the weight of the world on your shoulders, despite the amount of support you have. Sometimes you are so overwhelmed, you don’t even think about calling the HCP to let them know what is going on.
– Kristy
Behavioral and psychiatric symptoms in patients with dementia may be correlated with increased burden, depression, and distress in caregivers.3 These data support the idea that combinations of pharmacologic, behavioral and family interventions that address these neuropsychiatric symptoms may benefit not only the patient but their caregiver as well.
Delusions in People With Dementia Are Among the Most Distressing Neuropsychiatric Symptoms for Family Caregivers
One study found that the following neuropsychiatric symptoms were rated as most distressing to family caregivers of older people with dementia4:
Mean age of care recipients, 64 years
She would drive to my brother’s house with my dad in the car and bang on my brother’s door, screaming that she couldn’t find Dave (my dad) and that the Dave that was with her was not the right Dave. They make my dad feel like he is going crazy. He often wonders the same thing I do – are these real scenarios, people, etc.?
– Kristy
In a study of 177 family caregivers, caregivers identified the neuropsychiatric symptoms that were most distressing to them. Three symptoms were rated as the most distressing: irritability, delusions, and agitation/aggression.4 One reason caregivers may find delusions distressing is that they are often the target of the patient’s delusions.5 As you can imagine, being told “You’re stealing my things!”, “You’re going to abandon me!”, “You’re not my spouse. You’re an imposter!”, or “You’re having an affair!” day after day could be very distressing.
Informal Caregiver Burden Is Associated With Patients’ Risk of Institutionalization
Caregiver burden is important not only because of the suffering it can involve for caregivers, but because its severity is associated with institutionalization of the individual with dementia.2 According to 1 study, patients whose caregivers reported extreme burden were 8 times more likely to be institutionalized.2
No, I don’t think my dad will be able to continue caring for her at home. What I think should happen next is that she should be in a facility that specializes in Alzheimer’s patients. What my dad thinks should happen is having someone watch my mom one day a week for 8 hours so he can take care of himself.
– Kristy
In dementia, symptoms often become too much for family caregivers to manage, and patients are moved into nursing homes.2 The burden of caregiving may be stressful, and often the negative impacts of caregiving for those with dementia necessitate institutionalization.2,6 For example, informal caregivers assisting older adults with dementia experience twice as much work productivity loss compared to informal caregivers assisting older adults without dementia.1*
Behavioral Problems in Older Adults With Dementia Factor Into Professional Caregiver Burden
Behavioral problems in people with dementia can also negatively affect professional caregivers.7,8 A meta-analysis of 17 studies that examined workers caring for patients with dementia in a long-term care setting showed that 22.1% to 68.6% reported high levels of emotional exhaustion.8 Another study showed more than half of caregivers perceive residents’ behavior as very challenging.7
*Data from a cross-sectional study of caregivers of nursing-home residents with dementia in the UK (N=61).
My mom is paranoid she will be put away and never see us again. It is her worst fear. Her fear of abandonment contributes to my dad doing everything he can to care for her at home.
– Kristy
References
- Chi W, et al. Washington, DC: The Office of the Assistant Secretary for Planning and Evaluation; 2019.
- Hébert R, et al. J Gerontol A Biol Sci Med Sci. 2001;56(11):M693-M699.
- Mohamed S, et al. Am J Geriatr Psychiatry. 2010;18(10):917-927.
- Fauth EB, et al. Int J Geriatr Psychiatry. 2014;29(3):263-271.
- Ballard CG, et al. Int J Geriatr Psychiatry. 1995;10(6):477-485.
- Porter CN, et al. SAGE Open Med. 2016;4:2050312116661877.
- Duffy B, et al. Dementia. 2009;8(4):515-541.
- Costello H, et al. Int Psychogeriatr. 2018;31(8):1202-1216.
