As a caregiver, one of your most important tasks is helping protect the rights of those you care for. This is incredibly important for caregivers who work with dementia patients, as the patient may not have the ability to advocate for themselves. Dementia patients are at an increased risk of elder abuse and exploitation due to their cognitive state. As a caregiver, you can be an important part of protecting them. 

If you are a caregiver who is also a family member, you may have more input and authority than if you are an outside source. But even if you are an outside caregiver, it is important that you know what the patients’ rights are, and what your role is in helping protect them. Caregivers can help protect the rights of those they care for in the following ways. 

Be Informed about the Patient and His or Her Needs

Caregivers can help protect the rights of dementia patients by making sure they are aware of the following important facts:

• Who has power of attorney (POA) for medical and financial decisions?
• Who is responsible for managing daily finances (in the event you shop for the patient or transport them to appointments, etc.)?
• Who should be called in the event of an emergency?
• What is the name and contact information for the patient’s doctor? 
• What is the patient’s cognitive state, and what are the challenges?

If you are a caregiver brought in from an outside source, the patient’s family may not want you to have access to certain personal information. Have a candid discussion with the patient and his or her family about what information they feel you need to know. Being informed is one of the first steps in protecting the patient, and yourself. 

Prevent Elder Abuse and Report Concerns

Dementia patients are among the most vulnerable in the elderly population. Patients with dementia have difficulty remembering situations and recalling details. They may not understand that abuse or neglect has occurred, and they may be afraid to speak up. As a caregiver, you are one of the most important advocates for your charge. As you care for the patient, be aware of situations that may indicate abuse or neglect, such as:

• Unexplained bruising or injuries
• The patient experiencing sudden changes in mood or behavior
• The condition of the patient’s living area deteriorates
• The patient makes concerning comments about a certain person or event
• The patient’s medications are missing or are misplaced

If you notice any sign of abuse or neglect, it is important to report it. Addressing concerns of abuse or neglect is never easy, but it is necessary. Take time first to talk to the patient’s POA or whomever is their primary representative and point of contact. Do not make accusations, but address your concerns honestly. 

If you are concerned that the patient is in immediate danger, you can always call Adult Protective Services (APS) as well. Complete a report with as many details as you can. APS may open an investigation into your concerns. If the patient lives in a nursing home, you may also want to contact the local Long-Term Care Ombudsman and ask for help. 

Utilize Resources to Protect and Support Patients

Caring for a dementia patient is not always easy. You may have questions about their care, benefits, insurance, or healthcare needs. Fortunately, there are resources available for caregivers. Most states and the federal government offer programs to help ensure that caregivers have the tools they need. 

Whether you are a friend, family member, or professional caregiver, these tools can help with a variety of questions or concerns, including healthcare, insurance, finances, and long-term care.

Americans with Disabilities Act National Network

One of the most important things you can do to help protect the rights of someone you are caring for is to understand protections available under state and federal law. The Americans with Disabilities Act (ADA) is one of the fundamental sets of laws protecting individuals who are disabled. The ADA National Network offers caregivers and families information, free publications, briefings, and updates on regulations that affect disabled persons.  

Medicare

Medicare offers a variety of insurance options for individuals over 65 who receive Social Security benefits. These programs offer free or low-cost health insurance and drug coverage. There are also programs that can help reduce the cost of non-covered services. 

Social Security 

Social Security benefits based on income earned can be limited, and may not offer enough income to support an individual with dementia. However, Social Security also offers Supplemental Security Income (SSI), which offers qualifying recipients a more substantial monthly benefit. This supplements their income, and does not replace other benefits. 

Administration on Aging

The Administration on Aging (AoA) is a valuable resource for caregivers and families. The AoA offers support services including legal assistance and insurance counseling. If you are caring for someone who needs long-term care, the AoA can also help find an applicable facility in your area. The AoA also offers the support of community organizations, which offer in-person support and counseling for caregivers and families. 

Department of Veterans Affairs

If the person you are caring for is a veteran, or their spouse is, the Department of Veterans Affairs (VA) may be an excellent source of support. The VA offers assistance with services related to healthcare, disability, pension, burial benefits, and more. If you are caring for a veteran, this is a great resource for you, the person you are caring for, and his or her family. 

The Important Role of Caregivers

Protecting the health, well-being, and rights of patients with dementia require a great deal of care and attention to the details of his or her life. Caregivers are at the forefront of making sure that patients are safe. By learning, gathering information, and being open with the patient and his or her family, caregivers can help prevent elder abuse and ensure that the patients’ rights are protected. 

 

 Sources:

https://www.nursinghomeabusecenter.org/types-of-nursing-home-abuse/

https://www.agingcare.com/articles/10-government-programs-caregivers-can-access-for-their-elderly-parents-120513.htm

https://adata.org/

https://eldercare.acl.gov/Public/Index.aspx

https://www.asaging.org/blog/ethical-caregiving-and-protecting-elders

https://www.nursinghomeabusecenter.org/nursing-home-abuse-lawyer/