Dealing with Dementia

Dealing with DementiaDementia refers to problems in memory and thinking that are advanced, interfering with daily activities and quality of life. While not everyone with advanced Parkinson’s has dementia or paranoia, some do. For people with Parkinson’s, dementia has a great impact on ability to participate in social settings and perform basic activities due to the combination of motor AND cognitive impairments, and it can have serious effects on the caregiver. In fact, significant cognitive decline in the person with PD is associated with caregiver stress.

As dementia progresses, fact and fantasy can become confused, and the behavioral consequences can be particularly difficult. People with Parkinson’s may become disoriented and unable to be left alone. They may show signs of agitation, delusions, mood fluctuations and increased impulsivity. Making the problem even harder, many of the drugs we currently use do not adequately address these problems.

If someone says something you know isn’t true, try to find ways around the situation, instead of contradicting them. Make this your mantra:

It is the disease making these accusations, not my loved one.

It is not an easy concept to internalize, but it is essential to your emotional wellbeing. Often, the quality of your relationship with your loved one prior to the onset of Parkinson’s will impact your willingness to accept this reality.

We all attribute reasons for people’s actions to experiences with them in the past. If you had a loving marriage for 30 years before your husband showed signs of dementia, it might not take that long for you to realize the disease is the cause of his confusion and outbursts. On the other hand, if you hadn’t spoken to your mother for many years before you became her caregiver, her paranoia and negativity might reopen old wounds and make caring for her even more complicated and trying. Accusations of adultery, theft and trying to murder the patient are extremely painful when you are making sacrifices to provide care. Each situation is unique, and not everyone will encounter these scenarios. But if they do occur, remind yourself that it is the disease talking. See the CareMAP videos on Thinking Changes for more information.

In 2016, the Parkinson’s Foundation hosted a Caregiver Summit for that brought together caregivers from all over the U.S. and the world to share experiences and everyday strategies for caring for the person with Parkinson’s and caring for yourself. If you missed the event, don’t worry! All the general sessions were recorded and are available on our YouTube channel.

Tips to Calm the Person with Parkinson’s

Behavioral strategies can help deal with issues like impulsivity, wandering, poor initiation and problems with communication. In addition to helping the person with PD, adopting strategies to help manage your loved one’s dementia can alleviate your stress and emotional pain, too. Try these tips to calm the person with PD:

  • Serve meals and arrange visits at the same time every day. Many patients benefit from a regular routine in their day-to-day activities and feel more comfortable with a clear, structured schedule.
  • Simplify the décor of the living area. Reducing excessive stimuli may help with distractibility or confusion and can help minimize memory, visual-perceptual or orientation difficulties.
  • Use a nightlight or low-level lighting to help reduce visual misperceptions and confusion at nighttime.
  • Keep calm and still while you talk to your loved one; avoid speaking sharply or raising your voice. People with dementia may respond with impatience or even aggression if they can’t find the right words to express what they mean. Try asking if they can explain in a different way. Listen for clues and pay attention to body language. You may be able to interpret what they’re saying, but make sure to confirm that you are correct.
  • Demonstrate your care and affection for your loved one. Maintaining physical contact throughout the stages of dementia is important.

If your loved one is not responsive, it can be tempting to speak about him as if he weren’t there. Remember that your loved one has the same feelings and needs he had before developing dementia.

Other Tips

  • Watch out for sensitivity to medications. Many antipsychotic medications that are commonly prescribed for people with Alzheimer’s who have disruptive behavior are contraindicated in PD and can cause severe, sometimes dangerous, side effects. Caregivers must be vocal advocates about avoiding these medications, especially in a hospital setting where health care professionals may not be familiar with Parkinson’s. This “I Have Parkinson’s” Reminder Slip includes a list of medicines that are not safe for people with Parkinson’s and can be given to every health care provider you interact with. (Get an Aware in Care kit for more resources and important information to help the person with Parkinson’s get the best possible care in the hospital.)
  • Look for community resources BEFORE you need them. No two cases of Parkinson’s or dementia are alike, and the speed of progression varies from person to person. Explore resources in your community, such as the Area Agency on Aging; services like home health aides and visiting nurses; and residential support like respite care and long term care facilities before you need them. Where to Find Help offers more ideas. This allows you to learn about the providers, the costs and any intake processes when you are not in a crisis situation. 

Watch the Thinking Changes videos for more information and practical pointers on dealing with dementia and other cognitive and behavioral issues your loved one may experience.

Tip sheets to download
Books
Resources on the web
Videos
Groups that can help

Caregiver Story

Dealing with Dementia