This week we have been discussing communication and how to effectively communicate with loved ones with dementia and Alzheimer’s. Today’s blog comes from Barbara, the founder of Caregiving Cards, a communication tool for patients with dementia and Alzheimer’s disease. The cards are a great way to help overcome the communication challenges found in caregiving.
In a recent survey conducted by Caregiver Cards, we asked caregivers of all areas (paid, non-paid family members,) and professionals (registered nurses, administrators, etc.) who care or work with persons affected by Alzheimer’s or dementia what their #1 frustration was and what problems they faced while providing care. The answer was communication!
Communication is more than talking and listening; it deals with relationships. If Alzheimer’s and dementia are greatly affected by an ability to communicate then one can infer that the relationship between the affected person and caregiver would be greatly affected as well. With a decline in language, the caregiver usually feels a decline in the relationship. This can lead to a hidden danger of viewing a loss of communication as a loss of a person even though they are still here. This often leads to isolation, loneliness, frustration, loss of quality of life, in short, caregiver burnout. This is dangerous to both caregiver and the person receiving care.
This is the hardship that Barbara Worthington, founder and owner of Caregiver Cards, is determined to reduce. Barbara has firsthand knowledge of the joys and challenges that come with being a caregiver to a loved one with Alzheimer’s and dementia, while caring for both of her grandparents. Additionally, Barbara’s oldest daughter, was diagnosed as having Autism. Being a parent to a child with Autism, opened up another channel of communication, picture prompts. It was these experiences, together, that gave way to the idea that persons affected by Alzheimer’s and related dementias, could communicate easier using illustrated, picture cue cards.
Caregiver Cards is a series of 146 illustrative and descriptive cue or prompt cards used by caregivers for communication, prompts and cues with individuals who may have Alzheimer’s disease, dementia or related memory, speech, hearing, and developmental disorders. Caregiver Cards works based on the principle that people with Alzheimer’s disease, while having difficulties with short term memory and language/communication processing (the way we receive or understand and the way we express verbal messages) the ability to read is usually unaffected, as long as the individual with Alzheimer’s was literate as a child.
This is because reading is an overlearned process that becomes automatic known as Automaticity. This is where Caregiver Cards, or any type of visual cue, provides the most help. For the person with Alzheimer’s or related dementia is able to see a picture and a prompt word and read it, thus allowing for a better understanding of what the caregiver is trying to communicate at that present time. This better understanding can greatly reduce anxiety, confusion, frustration and behaviors that, so often, are present with the person living with Alzheimer’s.
Caregiver Cards has already seen tremendous success (even reaching Canada and the United Kingdom), and gaining positive testimonials (“All is fine and Dad is doing well. The cards have been helpful.” Anonymous family caregiver). That is Barbara Worthington’s biggest joy. “To know that any of the millions of caregivers out there, who are sacrificing, often selflessly, to provide care to their loved one with Alzheimer’s can receive a little much needed relief in the way of communication, makes my heart warm.” “Knowing that my family’s journey can help others is a privilege.” “I hope that through that and the creation of Caregiver Cards, we can give you Hope to Cope.”