Dealing with Dementia and Decline in Cognition

Like other serious chronic conditions, Parkinson’s disease (PD) is an unwelcome guest that is here to stay. If you are caring for a person with PD, coping with this new role can be challenging. As a family member or friend, it is natural to wonder what is needed and how to be supportive and respond to that need. It is also normal to be confused about what you can do. Feelings of sadness, worry and guilt are all common reactions to adopting a new role as a carepartner/caregiver. This can be especially tricky when faced with the non-motor symptoms of PD, such as cognitive decline and dementia.

While about 50% of people with PD will experience some cognitive decline as the disease advances, only ~30% of those with cognitive decline will go on to develop dementia in the later stages. The progression of PD is thus different for each person. As a carepartner/caregiver, this can add to the ambiguity of caring for the person with PD, as well as the challenge of dealing with it because there is no way to know for sure what will happen in the future.

Some symptoms of advanced cognitive decline and/or dementia that can pose every day challenges, like getting in the way of interactions and communication, are:

• Difficulty concentrating
• Difficulty with planning and sequencing tasks
• Changes in perception
• Altered judgment Slowness of thought and in expressing thoughts
• Problems with word-finding
• Difficulty following conversations in large groups
• Difficulty understanding the emotional meaning of a conversation
• Difficulty changing topics quickly, or losing ‘train of thought’ when talking
• Visuospatial difficulties (such as conceptualizing things in 3D)
• Forgetfulness and difficulty with retrieval of learned information
• Behavioural changes (such as aggression)
• Language deficits (including finding words, articulation, volume and tone)

The skill that is often impaired first is the ability to think of the right word. People may struggle to put thoughts together and require more time to organize and communicate their thoughts.

Another skill that may be impaired early on is the ability to understand complex sentences and concepts. A person’s contributions to conversations are often affected. In the early stages, the person may not try to explain original thoughts or insights and their breadth of topics for conversation may be narrower. As PD advances, these communication skills may begin to worsen. Cont’d… Cognitive decline and/or dementia can change how a person thinks, acts and/or feels. These changes often present special challenges for families and carepartners/caregivers. An ordinary conversation, for example, can be quite frustrating when your loved one has difficulty remembering from one moment to the next what has been said.

Ten Tips for Communicating with a Person with Cognitive Impairment

We aren’t born knowing how to communicate with a person with cognitive decline and/or dementia —but we can learn. The Family Caregiver Alliance® states that: “improving your communication skills will help make caregiving less stressful and will likely improve the quality of your relationship with your loved one. Good communication skills will also enhance your ability to handle the difficult behavior you may encounter as you care for a person with a dementing illness” (2016).

1. Set a positive mood for interaction. Your attitude and body language communicate your feelings and thoughts stronger than your words. Set a positive mood by speaking to your loved one in a pleasant and respectful manner. Use facial expressions, tone of voice and physical touch to help convey your message and show your feelings of affection.
2. Get the person’s attention. Limit distractions and noise—turn off the radio or TV, close the curtains or shut the door, or move to quieter surroundings. Before speaking, make sure you have her attention; address her by name, identify yourself by name and relation, and use nonverbal cues and touch to help keep her focused. If she is seated, get down to her level and maintain eye contact.
3. Speak slowly, clearly and carefully. Use simple words and sentences. Speak slowly, distinctly and in a reassuring tone. Refrain from raising your voice higher or louder; instead, pitch your voice lower. If she doesn’t understand the first time, use the same wording to repeat your message or question. If she still doesn’t understand, wait a few minutes and rephrase the question.
4. Ask short, simple questions. Ask one question at a time; those with yes or no answers work best. Refrain from asking open-ended questions or giving too many choices. For example, ask, “Would you like to wear your white shirt or your blue shirt?” Better still, show her the choices—visual prompts and cues also help clarify your question and can guide her response.
5. Listen with your ears, eyes and heart. Be patient in waiting for your loved one’s reply. If she is struggling for an answer, it’s okay to suggest words. Watch for nonverbal cues and body language, and respond appropriately. Always strive to listen for the meaning and feelings that underlie the words.
6. Break down activities into a series of steps. This makes many tasks much more manageable. You can encourage your loved one to do what he can, gently remind him of steps he tends to forget, and assist with steps he’s no longer able to accomplish on his own. Using visual cues, such as showing him with your hand where to place the dinner plate, can be very helpful.
7. When the going gets tough, distract and redirect. If your loved one becomes upset or agitated, try changing the subject or the environment. For example, ask him for help or suggest going for a walk. It is important to connect with the person on a feeling level, before you redirect. You might say, “I see you’re feeling sad—I’m sorry you’re upset. Let’s go get something to eat.”
8. Respond with affection and reassurance. People with dementia often feel confused, anxious and unsure of themselves. Further, they often get reality confused and may recall things that never really occurred. Avoid trying to convince them they are wrong. Stay focused on the feelings they are demonstrating (which are real) and respond with verbal and physical expressions of comfort, support and reassurance. Sometimes holding hands, touching, hugging and praise will get the person to respond when all else fails.
9. Remember the good old days. Remembering the past is often a soothing and affirming activity. Many people with dementia may not remember what happened 45 minutes ago, but they can clearly recall their lives 45 years earlier. Therefore, avoid asking questions that rely on short-term memory, such as asking the person what they had for lunch. Instead, try asking general questions about the person’s distant past—this information is more likely to be retained.
10. Maintain your sense of humour. Use humour whenever possible, though not at the person's expense. People with dementia tend to retain their social skills and are usually delighted to laugh along with you.

Caregiving for someone with PD who is having cognitive impairments is challenging. You may often feel like you are trying to hit a moving target; not knowing exactly what your loved one is wanting or needing. Building strong communication patterns can be helpful to maintaining a loving and supportive partnership with them. This being said, you may also want to share your experience with other carepartners/caregivers; those also caring for someone with PD, just like yourself. Finding a group of individuals that can relate to how you are feeling is extremely important to your own self-care. Parkinson Society British Columbia can help you find caregiving support groups in your area. Call us 1-800-668-3330 or email us info@parkinson.bc.ca to find a group near you.

Portions of this article were reprinted with permission of Family Caregiver Alliance®. For more information, visit www.caregiver.org.

Sources

Family Caregiver Alliance® National Center on Caregiving. (2016). Caregiver’s Guide to Understanding Dementia Behaviors. Retrieved from https://www.caregiver.org/caregivers-guide-understanding-dementia-behaviors 

This content was published in the Summer 2016 edition of our quarterly magazine, Viewpoints. The content was accurate as of this publication date.