Special Guest Authors: Anna Chodos, Anna Hines, Ashley Johnson
Lisa is a 78yo woman with moderate stage dementia. Two years ago, she became more irritable. She was snapping at people and refusing medications. At that time, you taught her family a couple of strategies for managing these behaviors and connected them to a local organization that provided education and support for caregivers of people with dementia.
Lisa is now wandering frequently. She is here with her husband and daughter. Lisa insists to you that she must leave the house frequently, for errands, to visit a friend, or to go to an appointment. Her family reports that she says this to them as well. She left home twice by herself in the last month and was found later at a local park. Generally, caregivers have been able to redirect her from leaving by inviting her to help in the garden or do things around the house. Alternatively, they go along for her errands, which become 30 min walks in their neighborhood that leave Lisa much calmer. Sometimes Lisa really wants to leave, but someone cannot go out with her. She gets angry and yells. She has hit family members who try to distract her or coax her into another activity. This has happened with increasing frequency since the last visit and is very upsetting to her husband and daughter. They are both feeling overwhelmed and concerned about Lisa’s safety.
What interventions would you recommend for Lisa at this time?
A) Revisit a structured model for caregivers to manage behavioral changes associated with dementia, e.g. the DICE model.
B) Refer the family to social services, e.g. a local agency on aging, for more help with supervision.
C) Encourage the family to add a ring camera or security device to notify family members if the front door is opened.
D) Advise the family to enroll her in the Safe Return program, so if she wanders, she is more likely to be brought home.
E) All of the above
Behavioral and psychological symptoms in dementia (BPSD) are a group of diverse symptoms that include wandering, aggression, and irritability. BPSD occur in almost all people with dementia at some point in the course of their disease, and are a major source of distress for both patients and caregivers (Kwon, 2021). As the brain changes with progressive neurodegeneration, people’s behavioral symptoms also change over the course of their disease. Symptoms may become more severe over time or may abate completely.
A key clinical skill is to identify and name the specific behavior that is occurring in your assessment, create a care plan that targets that behavior, and support caregivers in gaining the skills and resources to implement a behavior management plan. We will review several non-pharmacologic strategies to address BPSD, leaving the pharmacologic management of BPSD for a future PsychSnap.
We can use average population data like this to make thoughtful choices about medications. However, our best data on the efficacy and side effects of a medication for a specific patient comes from that patient—the expert on their own experience.
Non-pharmacological therapies are the first line approach for the management of BPSD. Practically, this means that we as clinicians help the person’s caregivers, whoever they are (family vs. hired), develop strategies to manage the behavior. This then helps the person living with dementia manage their behavior differently. For example, a person with dementia who is irritable and easily agitated may escalate their agitation if a caregiver responds with frustration or an annoyed tone of voice; a calm reassuring response may have the opposite effect.
These 4 best practices for dementia behavior management can be a foundation for managing BPSD (Porsteinsson, 2021).
- Ensure routine and simplify tasks.
- Daily physical and social activity.
- Provide a safe environment.
- Address hearing and vision changes.
There are also other general interventions that can help with wandering and reduce its potential harm:
- Regular exercise to reduce restlessness.
- Put STOP signs on exit doors in the home to help reorient the person.
- Place a black mat in front of the exit doors. People with dementia may perceive it as a (black) hole and avoid walking there.
- Door alarms to alert caregivers that someone has left.
- MedicAlert membership plan with wandering support for a safe return
- Adult day program, or other supervised activities, to reduce caregiver burden if it is available and accessible.
When managing a specific problematic behavior in an individual with dementia, one popular framework is the DICE approach (Kales, 2014).
DICE stands for Describe Investigate Create Evaluate.stands for Describe Investigate Create Evaluate.
Describe: Describe in detail the behavior that occurs, including who is there, what happens, when it happens, and what the consequences are.
In Lisa’s case, she expresses anger and uses physical violence when she is told she cannot go out or someone tries to redirect her to another activity. This happens at different times during the day. It is scaring her caregivers and causing her great distress. It has been getting worse over the last few months.
Investigate: With this specific behavior in mind, investigate potential triggers. Consider all of the following:
- Status of basic needs: Pain, hunger, thirst, toileting needs, fatigue, overstimulation, social isolation, feelings of safety
- Time of day
- Status of medical comorbidities, new medications
- Comfort with caregiver: new caregiver, particular caregiver, inconsistency of caregivers
- Cultural factors: expectations of the caregiver/patient, comfort in the scenario, language concordance
In Lisa’s case, we would ask her caregivers to notice if any of these factors seem relevant. Lisa has had no medical changes and has been living in a stable environment with people she knows, so many of these do not apply. Her caregivers wonder if basic needs could be playing a role.
Create: What changes could be made to address the possible triggers? Trial these changes for several days to a couple of weeks to assess the impact.
In this case, Lisa’s caregivers frequently try to redirect Lisa when they are unable to go out with her. In the absence of clear triggers, the next interventions could be empiric trials focused on her basic needs: offer to escort her to the bathroom, offer some food or drink, offer medicine for her knee arthritis. The family decides that their initial intervention will be to offer her a snack when she gets upset. She has been eating less overall and may be hungry and unable to communicate this directly
Evaluate: Did the change work, at least to some degree? Stop what doesn’t work at all. Plan for multiple trials and keep track of what does and doesn’t work.
When the family tries offering Lisa food when she is upset, they find no change in her behavior. Using DICE, the caregivers then return to “Create” to design another intervention. When they try offering warm peppermint tea, Lisa accepts the redirection about half of the time.
Introducing a structured model like DICE to help caregivers manage problematic behaviors in people with dementia can be a lot to do in a clinic visit. Our hope is that primary care clinicians can get families started in the process. Once caregivers are interested, we can encourage them to continue to learn more through organizations that support caregivers of people living with dementia. Please review this previous PsychSnap that similarly tries to get patients started with the basics of CBT for insomnia in primary care.
A great resource for learning about non-pharmacologic interventions is the Alzheimer’s Association’s extensive list of treatments for BPSD for professionals. The Family Caregiver Alliance also offers caregivers education, support, and relevant resources on their site. Some patients may also be eligible for programs that provide financial support for caregivers, like In-Home Supportive Services (IHSS) for people with Medi-Cal (California’s Medicaid) insurance.
Returning to Lisa’s case, the answer for possible interventions for wandering associated with agitation and physical violence in a person with moderate dementia are E, all of the above. We reviewed general non-pharmacologic strategies to address BPSD and specific strategies to reduce the potential harms of wandering. We also introduced the DICE approach and a couple of organizations where caregivers can learn more. By supporting caregivers in their role as the primary responders to the behavior of people with dementia, we help improve the behavior and quality of life of the person living with dementia.
Anna Chodos, MD is a UCSF Geriatrician and the Executive Director for Dementia Care Aware.
Anna Hines, NP & Ashley Johnson, DNP are Nurse Practitioners on the Dementia Care Aware team. They work to improve dementia care within primary care clinics in San Francisco.
Kwon CY, Lee B. Prevalence of Behavioral and Psychological Symptoms of Dementia in Community-Dwelling Dementia Patients: A Systematic Review. Front Psychiatry. 2021 Oct 21;12:741059. doi: 10.3389/fpsyt.2021.741059. PMID: 34744832; PMCID: PMC8566725.
Porsteinsson, A.P., Isaacson, R.S., Knox, S. et al. Diagnosis of Early Alzheimer’s Disease: Clinical Practice in 2021. J Prev Alzheimers Dis 8, 371–386 (2021). https://doi.org/10.14283/jpad.2021.23
Kales HC, Gitlin LN, Lyketsos CG; Detroit Expert Panel on Assessment and Management of Neuropsychiatric Symptoms of Dementia. Management of neuropsychiatric symptoms of dementia in clinical settings: recommendations from a multidisciplinary expert panel. J Am Geriatr Soc. 2014 Apr;62(4):762-9. doi: 10.1111/jgs.12730. Epub 2014 Mar 17. PMID: 24635665; PMCID: PMC4146407.
Send a Comment