When a Loved One with Dementia is Violent

Q. My uncle Ed recently died in New York, and I got a ride to the funeral with my aunt and my other uncle from South Carolina, who were passing through our area. I hadn’t seen or spoken to them in a while. I knew from my mother that my uncle has had dementia for three years now, but I didn’t know the severity. We seemed to have a nice conversation on the way up. Then, the truth came out at a rest stop when my aunt confided in me about my uncle.

The man my aunt married was a sweet, kind and gentle person, who loved animals, cooking, and his family. Aside from the forgetfulness he is experiencing, the man he is now, according to her, is like Jekyll and Hyde. At times, he screams at her a lot, and throws things and has “violent” moments. At other times, he is the sweet and kind person she always knew him to be. She has no warning which personality will come out. She mentioned his diagnosis of fronto-temporal dementia.

I am concerned for my aunt. Is this a normal thing that happens when people have dementia? What can people do in her situation and how can she deal with him?

A.  Fronto-temporal dementia (FTD) is a form of dementia that can cause uncharacteristic behavioral problems in the patient. It is called FTD because the frontal lobe of the brain (located behind the forehead) is the center of judgment and self-control, among other things. It progresses more rapidly than most other forms of dementia, so behavioral problems can arise rapidly.

Often, before a diagnosis, you will see subtle personality changes and extreme behavior, such as getting very angry about something that wouldn’t normally cause such a reaction.  Often still strong and physically healthy, an otherwise gentle person can become physically violent.

Unlike most other forms of dementia, memory is not always affected in people with FTD, until later in the disease. However, FTD affects a person’s ability to communicate through words or writing, and can cause a decline in understanding the written or spoken word. Affected persons know what they want to communicate and can see the misunderstanding in others, which can cause frequent frustration and loneliness.

FTD typically strikes people at a relatively young age — usually between the ages of 40 and 60. However, FTD can affect individuals both younger and older than this range. For people under age 65, FTD is the 2nd most common dementia after early-onset Alzheimer’s disease. In fact, 250,000 Americans are estimated to be affected by it. For individuals over 65, FTD is the 4th most common form of dementia after Alzheimer’s disease, vascular dementia, and Lewy body dementia. FTD inevitably gets worse over time, but the speed of decline differs for every person.

The Challenge of FTD for Caregivers

Families, friends, and significant others will face many challenges as the person you know and love changes. Family relationships, loss of work, declining health, financial decisions, and long-term care are only some of the issues to be dealt with.

  • A caregiver may suffer the gradual loss of his or her loved one.
  • Basic skills such as organizing, planning, and following directions will become almost impossible for the person with FTD. Thus, such tasks will need to be added to the tasks of the caregiver.
  • With behavior changes, family members will need to deal with embarrassing and often alienating moments with friends and within the community.
  • Personal lifestyle changes will be ongoing. The stress of providing care for someone with FTD can be incredibly difficult both physically and emotionally.

Caring For a Loved One with FTD

Similar to all caregivers, care providers must first stay healthy themselves in order to create a compassionate and therapeutic environment for loved ones with FTD. In addition:

  • It is critical to build a support network that expands beyond professionals to include family, friends, and other community relationships and resources.  It is essential to have regular help from family or friends for a few hours, a day, or overnight. This will reduce stress levels and renew your patience and positive energy.
  • It is a good idea to join a support group online or in your community. Being with others who have similar experiences helps with strategies and provides strength for every step of the journey. These interactions can be an important way to deal with a disease that other people often don’t understand.
  • Try and spend time (or journal) remembering who the person with FTD was and still is. The person you love remains. Be angry at the disease, not the person.
  • Consult with and receive services from professionals who can help. For example, a speech language pathologist may be able to teach adaptations to enhance your loved one’s communication abilities. An occupational therapist may teach you or your loved one how to redirect behaviors and how to modify daily activities for the person to maintain his highest level of independent function possible. Help is also available from the Association for Frontotemporal Degeneration (AFTD), a nonprofit organization that provides information, education, and support to those affected by FTD and their caregivers.
  • It’s important to encourage and facilitate the person with FTD to participate in every task he or she used to perform. Engagement in even small portions of a familiar activity/task will help maintain skill, provide dignity and happiness, and help slow the progression of the disease.
  • Limit instructions to one-step directions. For example, say, “Please put the forks on the table,” not “Please set the table.”
  • Keep up with doctor’s visits: There are some medications and treatments that may help manage some of the symptoms, so it’s important to seek and continue receiving help from a doctor, such as a neurologist or a psychiatrist, as soon as possible.
  • Be honest with yourself: When caring for a person with FTD becomes too much to bear, even with the help of professionals, skilled nursing care may be necessary.

FTD can affect decision-making abilities early on, so it is important to begin making financial and legal decisions soon after the disease starts. Critical documents for the person with FTD to sign include a general power of attorney naming a spouse or adult child or other trusted person to handle legal and financial affairs and an advance medical directive (including a long-term care directive) naming a trusted person to make medical decisions. In addition to setting up these incapacity planning legal documents for health care decisions, financial management, and long-term care needs, caregivers should also consider having a driving evaluation for their loved ones, before driving becomes a problem.

Although voluntary incapacity planning is, in general, preferred over guardianship and conservatorship because of the legal complexities of “living probate,” in some cases of FTD, where there are significant behavioral changes, guardianship and conservatorship may be needed in order to strip away the rights of persons suffering from FTD, so that the they cannot make the short-sighted financial and legal decisions that they might otherwise make.

Persons with FTD and their families face special legal and financial needs. Controlling the high costs of caring for a loved one with dementia, and navigating the emotionally and physically demanding requirements of caregiving, require the assistance of a highly skilled and specialized expert in the field of dementia planning.

Here at The Farr Law Firm, we are dedicated to easing the financial and emotional burden on those suffering from dementia and their loved ones.  We help protect the family’s hard-earned assets while maintaining your loved one’s comfort, dignity, and quality of life by ensuring eligibility for critical government benefits such as Medicaid and Veterans Aid and Attendance. If you have a loved one who you believe is suffering from FTD or any other type of dementia, please call us as soon as possible to make an appointment for a consultation:

Fairfax Dementia Planning: 703-691-1888
Fredericksburg Dementia Planning: 540-479-1435
Rockville Dementia Planning: 301-519-8041
DC Dementia Planning: 202-587-2797

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About Evan H Farr, CELA, CAP

Evan H. Farr is a 4-time Best-Selling author in the field of Elder Law and Estate Planning. In addition to being one of approximately 500 Certified Elder Law Attorneys in the Country, Evan is one of approximately 100 members of the Council of Advanced Practitioners of the National Academy of Elder Law Attorneys and is a Charter Member of the Academy of Special Needs Planners.