Study Identifies Unmet Needs of People with Dementia Who Live at Home, Caregivers
In an ideal world, I would have loved to have kept Mom at home when she was diagnosed with Alzheimer’s disease. That would have eased my guilt at having to take her to the nursing home, which broke my promise that I would never do that to her. However, I had no choice. Besides her dementia, Mom had chronic obstructive pulmonary disease (COPD) that required skilled nursing care.
She had remained at home for the three previous years as mild cognitive impairment increasingly attacked her brain. During that time, Mom fought against having a diagnosis and also didn’t do herself any favors by avoiding activities that could have engaged her brain. She also continued to drive, even though she increasingly was becoming confused. And she increasingly had difficulty managing her medications, thus eroding her own physical capabilities as COPD increasingly robbed her of lung function.
But could I have realistically kept her at home? It turns out that researchers suggest that with some adaptations, that could have been a possibility. “Currently, we can’t cure their dementia, but we know there are things that, if done systematically, can keep people with dementia at home longer,” Dr. Betty S. Black, an associate professor of psychiatry and behavioral sciences at the Johns Hopkins University School of Medicine, said in a press release. “But our study shows that without some intervention, the risks for many can be quite serious.”
For the study, researchers performed in-home assessments and surveys of 254 people who have dementia who are living at home in Baltimore. The researchers also interviewed 246 of the informal, non-professional caregivers who provide support to these people with dementia.
Their analysis found that 99 percent of the people who had dementia and 97 of percent of their caregivers identified one or more needs that have not been met. Unmet needs were then classified into six categories – safety, health, meaningful activities, legal issues/estate planning, assistance with activities of daily living and medication management.
The researchers found that 90 percent of the identified needs were safety-related. These needs included dealing with fall risk and wander risk management, as well as home safety evaluations. Researchers also grouped driving safety and safe management of guns and tools at home in this category. They warned that lack of attention to this category can result in injury or death to the person with dementia or to others. Safety issues also can lead to visits to the emergency room and admission to the hospital, both of which can be distressing to a person who has dementia. The recommended interventions included home assessment and alterations, use of monitoring devices, and removing access by people with dementia to items (cars, guns, etc.) that can pose a danger to themselves or others.
Furthermore, over 50 percent of the people with dementia did not have adequate meaningful daily activities. These included adult day care, attending senior centers and in-home activities. The researchers pointed out that a previous study suggested that in-home activities that are customized to the interests and capabilities of people with dementia can actually increase their engagement with others and reduce behavior symptoms while also decreasing the burden placed on caregivers.
More than 60 percent of people with dementia needed to receive medical care for conditions both related and unrelated to their dementia. The identified conditions needed to be addressed by the study participants’ primary care provider, a medical specialist, a dentist, eye doctor or hearing specialist. Pointing out that people who have dementia are more likely to have other chronic health issues that lead to hospitalization, the researchers hypothesized that if the study participants saw their doctors earlier, their quality of life could be improved and the cost of care could be lowered. One-third of the people with dementia still needed to have a dementia evaluation or diagnosis.
More than 85 percent of caregivers were found to have unmet needs in relation to community resources and caregiver education. Furthermore, 45 percent of caregivers in this study had unmet needs concerning their mental health; these needs included emotional support or respite care.
The researchers also found that study participants who were not white or who had more symptoms of depression had more unmet needs for caregivers as well as for the people who have dementia. Furthermore, unmet needs were found to be significantly higher for people with dementia who had lower incomes or fewer impairments when doing activities of daily living. The researchers also found that unmet needs were significantly higher for caregivers who had less education.
Primary Sources for This Sharepost:
Black, B. S., et al. (2013). Unmet needs of community-residing persons with dementia and their informal caregivers: Findings from the maximizing independence at home study. Journal of the American Geriatrics Society.
John Hopkins Medicine. (2013.) Study reports substantial unmet medical, safety and supportive care needs for patients and caregivers alike.
Preidt, R. (2013). Simple steps could keep people with dementia at home longer: study. MedlinePlus.