May 13, 2019
Navigating the Alzheimer’s Journey
For countless individuals, the words ‘Alzheimer’s’ and ‘dementia’ aren’t merely medical terminology, but rather an everyday reality. Their impact is felt not only by the person diagnosed, but by family, friends and other caregivers as well. At times, the challenges may feel overwhelming, isolating and even unmanageable. Yet, as a Dementia Consultant and Educator, I have also witnessed first-hand how supportive tools and resources, better understanding, and creative strategies, can have a powerfully positive effect. In navigating the journey, here are some helpful tips to think about:
Good communication and mindful communication go hand-in-hand. When talking to someone with dementia, be mindful of tone, body language and words. Be patient, use a gentle tone, avoid asking questions that rely on their memory, and give the person time to express themselves. Avoid condescending or criticizing statements, and instead use validating statements. Don’t hesitate to use props and visual cues either.
In the later stages of dementia, adopt approaches that further emphasize clarity. This may involve using shorter sentences; approaching the person calmly from the front; avoiding vague words; and asking ‘yes’ or ‘no’ questions instead of open-ended ones.
Remember that communication is not only about what’s said but what’s unsaid. Be mindful of the reactions of the person you are communicating with and attuned to not only what they’re saying, but their body language as well.
Put on Your Detective Hat
This may seem like puzzling advice for caregivers (after all, where does one find a detective hat?), but it actually points to a simple truth—that people, despite having Alzheimer’s, are still people—with their own unique motivations, past experiences, likes and dislikes.
When I encourage caregivers to think of themselves as detectives, I’m asking them to investigate what may be motivating a behaviour. The first step in this process is asking the central question: Why? If a person, for example, is sitting at the dining room table but not eating—is it simply because they have Alzheimer’s, or is something more specific motivating their behaviour? Their reluctance to eat could be due to some form of physical discomfort, such as an upset stomach or ill-fitting dentures. Perhaps, they dislike the food or think they’re at a restaurant and have to pay. If the person may be unable to directly communicate the reason, a caregiver can transform into the role of detective in asking the person some key questions such as: Are you feeling okay? Do you like the food? Are you worried about anything? etc.
By being a detective, caregivers can engage in a process of better understanding the person they’re caring for.
Find Creative Solutions
Once you understand why a behaviour is occurring, you can then tailor a creative personalized solution to address the problem, instead of a one-size-fits-all approach.
Take the earlier example of not eating at the dinner table—let’s imagine that the caregiver’s detective work determined that the person’s behaviour was because they found the lighting in the room too harsh. Perhaps the light was getting in their eyes, distracting them from eating and causing discomfort. The solution may be as simple as shifting the person’s chair to a different position, moving the dining table to another room, or adjusting the lights by dimming them.
In Conclusion… Caregivers Also Need Care
Being a caregiver is an incredibly meaningful role, but it can also be incredibly exhausting, which is why self-care is vital. Take breaks, incorporate relaxing and enjoyable activities into your routine, and, in short, take time for yourself. Consider also joining a caregiver support group where you can exchange ideas and connect. If you feel you may be experiencing caregiver burnout, visit your healthcare professional. Remember that you are not alone, and that help and support is out there.
Karen Tyrell CDP, CPCA, CDCP, is a Dementia Consultant, Educator & Author, and Founder of Personalized Dementia Solutions Inc. (www.dementiasolutions.ca). Karen offers her expertise on dementia care through speaking engagements, workshops and by working one-on-one with families and caregivers to provide emotional support and practical solutions.
The contents of this column are provided for information purposes only. They are not intended to replace clinical diagnosis or medical advice from a health professional. For any health-related issue, always seek medical advice first from a trained medical professional.