At Home with Dementia

By Richard P. Holm, MD
In the U.S. there are almost five million people with mild to moderate dementia. Studies show that about 70% of these people are at home, either alone or with a caregiver (often a spouse). If more people with mild to moderate dementia could stay home safely, this would save Medicare and Medicaid a great deal of taxpayer money. More importantly, this would provide those affected by dementia with their preferred environment. Indeed, it is important to allow all people the chance to stay at home whenever possible.

Recent Johns Hopkins research studied more than 250 people with dementia and found that 99% of the demented and 97% of their care givers had at least one unmet need. The foremost unmet need was safety issues which increased risk of falling, such as poor lighting in walkways. Other unmet needs included not performing regular exercise, poor follow-up with health care providers, not having prepared legal and estate planning, and not receiving needed help with medications and daily living activities. Researchers found that individuals with lower income, with depression, and/or with borderline—rather than severe—dysfunction, had significantly more unmet needs.

When there were at-home caregivers for these folks with early dementia, the caregivers were often not aware of these deficiencies. Add to all of this, the needs of the caregivers were often ignored or unrecognized. Remarkably, at-home caregiver stress and depression was one of the strongest predictors for an earlier move of the person, with dementia, to the nursing home.

Methods to enhance a person’s chance of staying at home are not difficult. Preparation for legal issues and estate planning should be done early and BEFORE memory loss. Other methods include providing raised toilet seats, grab bars in the bath and bedroom, properly tacked down carpets, adequate night-time lighting, and proper day and night time footwear. Researchers also strongly advise providing enhanced support for caregivers, such as educating them about support services available, like social services, occupational therapy, and caregiver support groups. In addition, screening for and treatment of any caregivers’ depression should be provided. This would go a long way in helping people stay at home as they age.

Bottom line: most of us (and our families) are not prepared for the possibility of dementia as we age. If we prepare, we greatly improve our chances for staying at home.