Dealing with Abuse, Neglect, Threats or Selfish Use of Others Receiving Care
A wide variety of obvious and not-so-obvious signs may indicate abuse, neglect, treat to harm, or exploitation of the person with Alzheimer’s disease or a related dementia. (2)
1. Weight loss may occur because the person forgets to eat or does not have food readily available. For convenience a caregiver may provide small packages of salty or sweet snacks, not healthy for people with high blood pressure or diabetes. Some foods are difficult to eat without help. For example, bananas and oranges need peeling while the crispness of apples or crackers may hurt an older person’s gums. Easy-to-open applesauce or peach slices are better.
2. Skin bruises, old and new, may cover the face, head, arms especially the elbows and forearms; and the legs, especially the knees. These bruises may come from problems with balance, walking, or vision. Clutter in hallways may lead to stumbling, falls, and bruises. However, bruises may result from “a few slaps” in an attempt to convince the person to cooperate with a care task or to stop asking questions.
When the physician touches the patient or tries to listens to heart and lung sounds, the patient may pull away or act afraid, which may be a clue that general physical or even sexual abuse has occurred.
Bruises or scrapes on the trunk of the body, thumb prints anywhere on the skin and a number of wounds in various stages of healing may indicate abuse. If the elder is too over-dressed for the weather (blouses and sweaters with high necklines and long sleeves and long pants during hot weather), there is reason for suspicion of abuse. Skin which is hidden under clothing may be covered with bruises and other injuries. The elder with Alzheimer’s disease may not remember when or be able to describe how the bruises occurred.
3. A large delay between the time of the injury and coming for health care or a mismatch between the type of injury and the explanation of reasons for suspicion. A chronic neglect of health needs or a history of “doctor hopping” should raise suspicions. The caregiver who solicits for pain medication for their loved one may have an addiction. A history of violence or substance abuse in the caregiver may warn of abuse or neglect of the care receiver.
4. When the caregiver has extreme flattery for the current health provider and claims all the other doctors “didn’t care” or “didn’t know what to do”, the current health provider needs to beware of being added to the “incompetent doctors” list.
5. A caregiver who acts overly attentive and “on edge” to be extra helpful to the family member undergoing evaluation or to the health team may be trying to compensate for neglect, abuse, or exploitation. Sometimes the caregiver is exploiting the elder, is heavily dependent on the elder’s financial support and place for a residence, and fights to have sole control of the care.
6. When an elder with severe progressive dementia is left for many hours without help, they may be unable to get food, water, or help if they fall. Looking for help or for their family member, they may wander outside and get lost. Lost or missing people with middle or late stage dementia may not respond to hearing someone call their name; they may stay hidden and often are found close to or within a mile of their home. (3 )
Tying a person to a chair or bed or locking the person in a closet or room are not solutions. Rope bruises or burns on the wrists, legs, trunk, etc. may be evidence of being tied to a chair or bed.
Any suspicion of abuse, neglect, threat to harm, or selfish manipulation of a person receiving care, especially someone with Alzheimer’s disease or a related dementia, requires immediate action
Watch and listen for suspicious signs . Listen carefully and document details. Have a health professional, the same sex/ethnicity/race as the elder, interview the elder.
In Florida any concern about abuse, neglect, threat to harm, or the selfish use of others receiving care (exploitation) may be reported as an anonymous phone call to the State of Florida Abuse Registry at:
- 1-800-962-2873 or
- 1-800-96-ABUSE [TDD (Telephone Device for the Deaf): 1-800-453-5145 or
- 1-800-914-0004 [Fax]
- Secure website reporting: www.dcf.state.fl.us/abuse/
Florida Statutes, Chapters 39 and 415 mandate that the Florida Department of Children & Families provide comprehensive protective services for children and vulnerable adults who are abused, neglected, at threat of harm, or exploited in Florida. Reports of abuse, neglect, threatened harm, or exploitation must be made to the Florida Abuse Hotline.
Any “report” meeting specific criteria must be investigated within 24 hours.
Long-term care. Although family and other caregivers may be highly motivated to provide the best care to loved ones, the long-term care of someone with a progressive dementia may lead to abuse, neglect, or threats to harm the care receiver. Some things that may lead to abuse are:
- Caregiver fatigueand frustration with the ongoing decline and endless care tasks such as giving medicines, dressing, eating, exercising, bathing, and toileting, may lead to harsh strategies to get through the daily routine.
- Caregiver stressors build up from many directions and responsibilities, such as running the household, caring for many family members, keeping up with employment and community responsibilities, and personal issues.
- Caregiver health. Besides monitoring multiple health problems of the person with the diagnosis of Alzheimer’s disease, older caregivers may have to manage their own health problems.
- Caregiver understanding. Sometimes caregivers do not understand the unpredictable, ups and downs of memory and thinking abilities. For example, the caregiver may assume that if the loved one could cooperate the day before, keep up with the conversation, and choices made yesterday, why is there so much difficulty to move, to understand, or to remember the plans for this morning?
- Caregiver at a distance. Approximately seven million people in the United States provide care in some way to relatives or significant others who live at least an hour or more away. (1) Working from a distance may be overwhelming to identify changing needs, keep up the loved ones’ nutrition and availability of easy-to-access-and-eat foods, pay bills, keep up with the house repairs, cleaning and laundry. Hired service providers may not be reliable; long waiting lists may delay services and access to senior center or adult day health care programs.
1. N ational Council on Aging & Pew Charitable Trusts. (1997). Nearly 7 Million Long-Distance Caregivers Make Work and Personal Sacrifices. (March 12, 1997). http://www.ncoa.org/content) (accessed 5/12/07)
2. Heilman, K.M., Doty, L., Stewart, J.M., Bowers, D. & Gonzalez-Rothi, L. (1996). Helping People with Progressive Memory Disorders. Gainesville, FL: UF Shands Neurological Center & Florida Department of Elder Affairs, Alzheimer’s Disease Initiative, p.69-83.
3. Rowe, M.A., & Bennett, V. (2003). A Look at deaths occurring in persons with dementia lost in the community. American Journal of Alzheimer’s Disease and Other Dementias, 18(6), 343-348.
4. Doty, L. (2007). Emotional Distance. www.AlzOnline.net.
5. Gayler, W., Advocate/Investigator, Institutional Conditions Team. Florida Advocacy Center for Persons with Disabilities,Inc. (Personal Correspondence,10/16/07)
Author : Leilani Doty, PhD, Director, University of Florida Cognitive & Memory Disorder Clinics (MDC), Box 100236, McKnight Brain Institute, Gainesville, FL 32610-0236, Office (352)273-5550; Fax 273-5575; firstname.lastname@example.org; Memory Disorder Clinic Appointments: (352)265-8408. Partially supported by the Florida Department of Elder Affairs Alzheimer’s Disease Initiative (2008)