Elder abuse has historically received less attention than child abuse and other forms of domestic violence, despite affecting an estimated 1 in 10 older adults. People living with dementia are particularly vulnerable: alarmingly, about half will suffer abuse or neglect, and they are nearly four times more likely than older adults without dementia to experience abuse.
The National Center on Elder Abuse defines abuse as “any knowing, intentional, or negligent act by a caregiver or any other person that causes harm or a serious risk of harm to an older adult.” Abuse can take many forms, including physical, emotional, financial, and sexual harm, as well as neglect by caregivers or self.
We don’t know whether abuse is more prevalent in the home or in long term care (LTC) settings like nursing homes, but we do know that “aging in place” – i.e., remaining in your home as you grow older – is a trend that shows no signs of reversing. The following interrelated factors create risk for abuse of people living at home with dementia. By understanding and addressing these factors, professionals and policy makers can take steps to prevent and address abuse in the home.
1. Cognitive impairment or dementia
Dementia – a general term for changes in memory, thinking, and other cognitive skills – can itself create a vulnerability to abuse. In a recent webinar hosted by the National Alzheimer’s and Dementia Resource Center, Dr. Laura Mosqueda, Director of the National Center on Elder Abuse, explained that people living with dementia may not always be able to recognize or report abuse, and if they do report it, they may not be believed. Some possible signs of abuse such as emotional distress, withdrawal from activities, depression, or anxiety, may be mistakenly attributed to the dementia if the person is not able to self-advocate.
Financial management skills tend to be one of the first areas of impairment for people living with dementia, which means that adults with dementia are also vulnerable to financial scams and fraud perpetrated by strangers. Other risk factors for elder abuse such as multiple medical conditions and functional disability and dependence (e.g. needing assistance with bathing, dressing, and cooking meals) are also more common among people living with dementia.
Diagnosing dementia early is an important step in identifying people at heightened risk of abuse.
2. Demands placed on family caregivers
More than 11 million unpaid American caregivers help care for people living with dementia. About two-thirds of older adults with disabilities who live at home and need long-term services and supports get all their care from a family caregiver.
Caring for someone with dementia can be particularly demanding and take a toll on caregivers. People with Alzheimer’s disease and other forms of progressive dementia are more dependent than those without dementia and need increased assistance, often over many years, with finances, housekeeping, managing medications, and personal care. Behavioral symptoms such as aggression and agitation are common and are associated with an increased risk of abuse.
Callers to the National Center on Elder Abuse resource line most often identify a family member as the abuser – usually a caregiver with whom the elder lives – and caregiver burden and stress are key predictors of abuse.
Programs like respite care and support groups can help reduce feelings of stress and isolation for family caregivers. Evidence-based training and support programs can equip families with the necessary skills and understanding to effectively respond to dementia symptoms and to help them feel less overwhelmed. Information and referral services and dementia care management can also help families access community resources and supports to meet their extensive needs.
3. Workforce shortages and lack of training
Good quality care for older adults, whether in the home or in LTC settings, requires a well-trained workforce. An Institute of Medicine publication noted that as care for older adults increasingly moves to a home and community-based setting, home-based direct care workers will “deliver more skilled care to patients with more complex needs.” However, current training is often minimal.
Experts have lamented the looming shortage of direct care workers to provide hands-on care to millions of older adults. Low pay and limited training create stress and burnout, leading to high turnover. Workers who are burned out or dissatisfied with their jobs appear more likely to perpetrate abuse. Because of the lack of oversight by other staff, people who live alone and are cared for within their own homes may be at particularly high risk.
In many ways, the strains on direct care workers and family caregivers are similar: having too few people available to help with care and too little support and training creates a situation where caregivers are overwhelmed and underprepared. Providing quality dementia care is eminently achievable but requires prioritization by providers and policy makers alike. This is a known need and one that we can begin to address through expanded training requirements and other investments in the LTC workforce.
4. More people living alone with dementia
An estimated 28-34% of people with dementia live alone, and although some individuals have a family member or other support person living nearby, many do not. People living alone with dementia are vulnerable to “self-neglect, malnutrition, injury, medication errors, financial exploitation, social isolation, and unattended wandering.” Social isolation makes it harder for others to monitor their well-being, to observe harm, or to connect the person to needed resources.
A first step in addressing these risks is identifying people who are living alone with dementia. Many people have not been diagnosed, or if they have, may not have an adequate system of supports to monitor their well-being and needs. Some dementia service providers are beginning to tackle this challenge by training “gatekeepers” such as bankers, hairdressers, faith-based communities, and home-delivered meals volunteers – i.e., those who often encounter and can help identify people living with dementia in the community.
Other communities encourage collaboration between first responders and community organizations when responding to situations of elder abuse and domestic violence. Once identified, people who need assistance can be directly connected to health and social service providers. This model is used for general dementia support and is also appropriate for people who may be living in unsafe or abusive situations.
What can we do?
The risk of people living at home with dementia being abused or neglected is, like so many problems facing older adults, only growing in urgency. The time is now to develop a multi-pronged approach that emphasizes:
- diagnosing dementia early;
- training professionals about the warning signs of elder abuse;
- offering programs that support family caregivers such as respite and evidence-based caregiver skills training;
- developing networks of healthcare and other community service providers who work collaboratively to support people living with dementia and their caregivers;
- increasing training, pay, and other efforts to bolster the quality and supply of paid in-home care;
- identifying people who live alone with dementia; and
- creating stronger linkages between first responders and local community organizations serving people living with dementia.
Implementing these steps would go a long way toward protecting some of the most vulnerable members of our society.