1. Get an accurate diagnosis. There are over 100 different types of dementia. Memory loss, particularly when it interferes with one’s ability to manage every day affairs, should not be brushed off as normal aging. Make sure to only compare the person as they are now, to the way they have always been and not to other people with dementia (e.g. someone who hosted dinner parties who now is having trouble following a recipe). Obtaining a formal diagnosis of the cause of the dementia allows the caregiver to partner with the medical team, obtain resources specific to the dementia type, be an advocate for the person with dementia, and increase knowledge about disease expectations and prognosis. Lewy body dementia in particular can present differently from Alzheimer’s disease with more prominent visuospatial difficulty, changes in movement, and changes in attention and alertness. Patients may have anxiety and depression or other changes in their body such as constipation. Visual hallucinations can occur earlier in the course of the disease, but don’t occur in everyone with LBD. Making a LBD diagnosis generally takes longer and caregivers often have to seek advice from multiple providers. Patients are often initially misdiagnosed. Seeking consultation at centers specifically created for the diagnosis and management of memory disorders or movement disorders is often helpful as providers are more likely to have knowledge of LBD.
2. Know when to ask for help. Caregivers are most likely to seek additional help with dementia symptoms such as behavioral outbursts or incontinence. However, the exact time when a caregiver needs help is an individual decision based on the level of care the person with dementia needs, caregiver location and availability, and potential home safety concerns. A caregiver cannot truly provide care if they are emotionally distressed, burdened, and not meeting their own personal or health needs. Family and friends may want to help but need specific direction for how to do so. Consider creating a weekly schedule of visitors which allows the patient and caregiver to create a routine. Consider other resources such as local nursing/medical schools with volunteer programs, adult day programs, or programs through arts and cultural institutions.
3. Be proactive, not reactive. Even if the caregiver feels they are managing well at the present time, plan for the future and know what resources are available should one need it. If it is not an option for the person with dementia to remain at home, then don’t wait for a crisis to get to know local options for care outside of the home. Find out about potential waiting lists or financial considerations. Complete advance directives. Further information about health care proxy (HCP) forms is available here (https://www.health.ny.gov/publications/1430.pdf). For patients with expressed preferences about avoiding or receiving life sustaining treatment, those who reside in long term care facilities, or those with a prognosis of a year or less should complete a MOLST (Medical Orders for Life-Sustaining Treatment) form with their HCP and physician (https://www.health.ny.gov/professionals/patients/patient_rights/molst/).
