by: Dr. Atit Bhattachan, MD, Geriatric Psychiatrist, Three Rivers Behavioral Health, W. Columbia, SC
As a clinician, we often have to face anger and frustration of family of dementia patients. At those times, I am thankful to my mentors, who taught us to talk about expectations and educate them about dementia caregiver burden, lack of education and unrealistic expectations are some of the reasons that lead to conflict. Caregiver burden is real and can be a big source of anger, depression, and anxiety among caregiver.
A lot of this is fueled by lack of education which can lead to unrealistic expectation. Expectation may range from complete cure of cognitive deficits and related neuropsychiatric symptoms/chronic medical illness to availability of resources to resolution of legal conundrums. Every patient is different and has his own unique challenges. However, education, to some extent, can be helpful.
Increasing life expectancy with the aging baby boomer generation has created an increase in the older adult population with the fastest growth among oldest (over 85 years). As a result, the incidence and prevalence of chronic medical illness and dementia related conditions are on the rise.
Dementia, as we know, is a clinical syndrome commonly seen in older individuals, consisting of global cognitive decline leading to significant effect on day to day functioning. Cognition refers to memory, judgment and attention, language, social awareness. In severe dementia, neuropsychiatric symptoms are prevalent which can be depression, anxiety, apathy, delusions, hallucinations, agitation. Functional decline relating to cognitive deficits and neuropsychiatric symptoms are major source of caregiver burden, institutionalization, and economic burden.
Dementia commonly refers to Alzheimer’s disease which is the most common type. Other types of dementia are: Vascular disease, Lewy body disease, Frontotemporal degeneration, Traumatic Brain Injury, Parkinson’s disease, Substance/Medication use, HIV infection, Prion disease, Huntington’s disease, Multiple etiologies.
Medications for cognition can be useful. They do not reverse the course or even stop it. There is much research being done at this time. Medications for Neuropsychiatric symptoms are widely used for various reasons including depression, anxiety to delusions, hallucinations. It is very wise to use non-pharmacological techniques initially.
Contributing causes of Neuropsychiatric symptoms: Biological stress or delirium, psychiatric syndrome associated with dementia, cognitive disturbance itself, environmental stressor, unmet needs, unsophisticated or intrusive caregiving
General tips for managing Neuropsychiatric symptoms:
- Memory related: Identify self and others if the patient does not remember names or is aphasic, supervise medication taking and secure them
- Falling and poor balance: Remove clutter or unnecessary objects, use a fall alert system, consider referral to Occupational therapist for home safety, evaluation, consider referral to Physical therapy for balance exercise, ask doctor to evaluate medication for their effects on fall
- Hearing voices or noises: Evaluate for hearing aids or need for adjustment of amplification
- Wandering or inability to respond to emergency: Develop emergency plan, ID bracelet, Identify if there are any triggers for elopement and modify them
- Nighttime wakefulness: Good sleep hygiene, evaluate for night time temperature, noise, light, level of comfort, eliminate caffeine beginning afternoon, create a structured schedule throughout the day, limit day time napping
- Communication: Use a calm, reassuring voice, avoiding negative words, use a light touch to reassure, calm or redirect, allow sufficient time to respond, help patient find words to express himself, offer simple choices
- Caregiver education and support: Understand that patient behaviors are not intentional
- Learn how to relax the rules (e.g. baths do not have to happen daily; there is no right or wrong in performing activities or tasks as long as the patient and caregiver are safe)
- Go along with the patient’s view of what is true and avoid arguing or trying to reason or convince.
- Engage patient with meaningful activities that tap into pre-served capabilities and previous interests; break each task into simple steps.
- Introduce activities involving repetitive motion (washing dishes, folding towels, sorting cards)
- Guide and cue the patient to initiate, sequence, organize and complete tasks.
Supportive care for patients:
- Provide comfort and emotional support.
- Address safety concerns with regard to driving, living alone, environmental hazards, medications, falls and wandering
- Maintain up to date advance directives and advance care planning decisions.
- Provide good nursing care in advanced stages.
Supportive care for caregivers:
- Provide comfort and emotional support
- Educate the caregiver about dementia
- Ensure that an expert clinician is always available for consultation, especially for crisis intervention.
- Encourage respite for caregiving.Encourage caregiver to maintain social network.