Dementia? Do Pigs Really Fly? Dementia Behavior Can Seem Like Manipulation

Kay Bransford calls her parents the “senior edition of Bonnie and Clyde.” Both have been recently diagnosed with dementia, but have been showing signs of forgetfulness for the past year or two.

Bransford recalls her parents, who have both had their driver’s licenses revoked but continue to drive, telling her the story they’ll tell police if they’re ever pulled over. In that moment, Bransford is certain the couple knows that they’re not allowed to drive, and are defiant about breaking the law. But just minutes later, the couple has forgotten the story completely and they don’t remember even having driver’s licenses. It’s just one of the many stories Bransford has about her parents’ deteriorating behavior. She admits, she sometimes wonders whether her parents are manipulating her and others, and that just adds to the guilt caregivers like her often experience.

“They’re not the parents I knew,” says Bransford, who cares for her 81-year-old mother and 80-year-old father. “It took me a while to realize that. In frustration I thought, ‘Is this the woman my mom really is?’ She’s saying so many things my mom would never have said. I know it’s a manifestation of the disease, but in the moment, I took it personally.”

Amanda Smith, M.D., medical director of the Byrd Alzheimer’s Institute at the University of South Florida estimates that one-quarter of the caregivers she interacts with have concerns similar to Bransford, and they question her about whether their parents are manipulating them.

“Sometimes caregivers assume that (their loved ones) are being manipulative because they just can’t believe their behavior,” she explains. But in reality, people with dementia aren’t able to think through the process of manipulation.

Adds her USF colleague, Eileen Pioley, an Alzheimer’s education director, short-term memory is the first to go for dementia patients. But it’s not uncommon for people to have mixed dementia, with different parts of the brain being affected. In one form of dementia called Lewy Body, memory quickly fluctuates. If a patient has frontotemporal dementia (also known as Pick’s Disease), it effects the part of the brain that filters behavior. So the person may do or say things that are socially inappropriate, but they have no gauge of right or wrong, which is why a loved one may lash out and make hurtful statements.

Additionally, people with dementia often know that they’re losing control and become afraid. Like a child, they act out because they’ve lost the ability to help themselves. Those emotions may also cause a patient to become easily agitated.

Notes Poiley, “The cognitive skills we have, dementia patients lose: logic, reasoning, problem-solving, decision-making. So a patient really couldn’t be manipulative.”

For those taking care of a person with dementia, there are several ways to cope with the conflicting emotions that most caregivers experience.

  1. Don’t take it personally: There is nothing to be gained by thinking your parent is being manipulative. Poiley believes this just adds to a caregiver’s stress. Instead, blame the disease and not the person. Set a goal to maximize and enjoy the time you have with them.
  2. Practice empathy: Kevin Henning, M.D. chief medical director at Amedisys Home Health Care, encourages caregivers to consider what their loved one is going through. “It’s hard for dementia patients to lose independence and it’s scary for them.”
  3. Avoid arguments: “You will not win an argument with a dementia patient. You can try to reason with them but you’ll never get anywhere,” adds Dr. Henning. This advice has been especially helpful for caregiver Kay Bransford, who says she no longer disagrees with her parents on issues she knows are untrue.
  4. Take a break: If you do find yourself arguing with your loved one, walk away for a few minutes. It’s very possible the person with dementia won’t remember the conversation, let alone the argument after a few minutes. It’s also important that as a caregiver, you get respite. “Caregiving is a 24/7 job,” adds Dr. Henning. “You have to get away from it sometimes.” Look into adult daycare for dementia patients, or see if another family member or home healthcare professional can care for your loved one for a few hours, so you can get a break.
  5. Listen and reassure: It can be hard when what a loved one says is illogical, but it’s important to listen and be patient with them. No one chooses to have dementia, so reassure your loved one as best you can that you are there to help them through this journey.
  6. Look for triggers: Try to get to the bottom of what drives your loved one’s behavior, suggests Dr. Smith. It may be environmental factors – for instance, your loved one may be cold, but can’t express that to you. Or your loved one may feel lost and alone. Consider what sparks outbursts or on-going arguments.
  7. Get help: Some medications can be very effective in assisting dementia patients with the anxiety they feel, so be sure to discuss your loved one’s behavior with their doctor or other healthcare professionals. It’s also important to seek emotional assistance as a caregiver when you need it. Find a support group where you can share your experiences and know that others are going through the same thing.
  8. Have a plan: Bransford wishes her parents had made their wishes about caregiving known to her and her siblings before they became ill. If possible, have your loved one consider the pros and cons of assisted living, nursing homes, home health care and other options, and have them decide how they want to spend their final days before their condition deteriorates.

While it’s still not easy for Bransford to reconcile the memory of her parents just a few years ago with their current condition, she considers that acceptance a mourning process. And Bransford likens her parent’s behavior to people who have suffered brain trauma. “I have to remember that they’re not doing things to be mean or cruel – there’s something wrong with their head. It doesn’t always take away the doubt, but it does get easier.”

World Dementia Council Global Care Statement

 

Statement on Importance of Care and Support

World Dementia Council

All persons affected by dementia – those living with
the diseases that cause it, their care partners, and their
family and friends – have a right to receive the highest
quality care and support possible to meet their needs.

They have the human right to be treated with dignity
and respect. And they are entitled to full and effective
participation and inclusion in society.

These rights transcend national boundaries and cultures.

Person-centered, high-quality care and support
should respond to the unique, individual needs of
each person and include rehabilitation and disability
support.

It should be delivered by well-trained
individuals, whether professionals or family and friend
care partners.

Such care and support can result in improved health
outcomes and quality of life, enhanced comfort, and
decreased stress for persons living with dementia.

For their care partners, it can enhance their health
and strengthen the informal support system. And, by
lessening the burden on health and long-term care
systems, it can help to lower costs.

Principles of High-Quality Care and Support

To ensure the right to high-quality care and support for people living with dementia and their care partners,

the following principles should guide the provision of care and support in all countries:

1. Individuals receive a timely and accurate diagnosis
– and are told of that diagnosis and its realistic
consequences. This is the gateway to making
informed personal life decisions and decisions about
medical treatment.

2. People living with dementia are entitled to respect
and dignity with full recognition that dementia in
no way diminishes the personhood of the individual
who has it.

3. Communities are inclusive of people living with
dementia, thus ensuring the opportunity for
participation and engagement by those living with
dementia, and empowering and enabling them to
remain in the community as long as possible.

4. Care is person- and relationship-centered.
Person-centered care is a philosophy of care
based on knowing the person, developing and
maintaining authentic relationships, providing
a supportive, culturally-sensitive environment
that includes opportunities for meaningful
engagement, and recognizing the person’s reality
and individual needs.

5. The provision of person-centered care is based on
continuous assessment and individualized care
planning designed to maximize independence,
develop effective strategies for communication,
minimize behavioral and psychological symptoms,
and identify available support for people living with
dementia and their care partners.

6. People living with dementia and their care partners
are involved as active participants in care planning
and decision making and have access to information
and support throughout the continuum of their
disease from diagnosis to end of life.

7. Medical and care professionals have adequate
knowledge of all aspects of dementia and work
across disciplines to ensure a holistic approach to
disease management. This will ensure that people
living with dementia are provided appropriate
medical care, psychosocial care, and disability
support – for both their dementia and their
co-morbid conditions – throughout the course of
the disease.

8. Care coordination and collaboration occurs
between all care providers, including medical and
allied health and social care professionals, health
systems, family care partners, paid caregivers,
community services, and volunteers. Governments,
non-governmental organizations (NGOs), and
patient advocacy groups have an important role
in building collaboration among care providers
and in monitoring and evaluating the care and
support provided.