Caring for Advanced Dementia at Home: Challenges and Specialized Solutions
Caring for individuals with advanced dementia at home presents significant challenges for families, often leading to a crisis point. Geriatrician Dr. Marc Rothman notes that advanced dementia care can become as complex as operating a nursing home for one person, requiring comprehensive management of care, diet, medication, recreation, appointments, and caregiver self-care.
Behaviors Prompting Facility Consideration
Specific behaviors often prompt family caregivers to consider moving their loved one to a facility. These include:
- Incontinence
- Increased paranoia
- Aggressive outbursts
- A tendency for individuals to leave their location and become lost
This behavior is sometimes referred to as 'wandering' or 'elopement.'
Understanding Wandering and Elopement
Elizabeth Edgerly of the Alzheimer's Association defines wandering as someone walking away and having difficulty returning.
Reasons for this behavior can include a desire to 'go home' even when already there, or to fulfill past responsibilities like going to work or picking up children.
Elopement specifically refers to leaving a secure area and potentially entering danger.
A Real-Life Incident: The Danger of Getting Lost
Such incidents can be highly distressing for caregivers. Valerie Staats, who cares for her wife Shelley Schultz, experienced an incident where Schultz, who has Alzheimer's, left their home and became lost for hours. Police located Schultz a block away, cold but unharmed.
Statistics indicate that 60% of people with dementia get lost at some point; almost half of those lost for over 24 hours face serious injury or death, often from exposure or accidents.
Following this event, Staats increased home security measures but found the overall strain of caregiving, combined with her own health issues, overwhelming. She is now considering moving Schultz to a secure memory care unit.
The Role of Memory Care Units
Memory care units provide specialized dementia care, often within secured wings, with staff trained to improve residents' quality of life.
Loren Shook, CEO of Silverado Memory Care, states their focus is on resident abilities, engaging them in purposeful activities such as teaching or working with children, and allowing pets.
Shook reports that engagement can reduce behaviors like wandering and aggression, and has helped residents regain lost skills like feeding themselves and walking.
Memory care is expensive, with costs at Silverado starting at $10,000 per month, varying by location and room type.
A Difficult Decision: Shifting Roles
Staats' neurologist confirmed Schultz is in the severe stage of Alzheimer's. Staats plans to move her wife to a nearby memory care unit, a possibility they had previously discussed. This decision aims to shift Staats' role from primary caregiver to a loving spouse, allowing for a different dynamic in their interactions.