Has your family recently received news that a loved one has been diagnosed with dementia? Or maybe you are already a caregiver of a person with dementia and feeling overwhelmed and lost.
With more than 6 million Americans living with Alzheimer’s or related dementia, you are not alone. But finding local resources and adapting to the changes the person with dementia is experiencing over time will be vital for you to sustain your health and well-being within a caregiver role.
“Often, people think a dementia diagnosis is terrible and takes away the person. I would argue that the dementia journey does not have to be terrible. If we learn to deal with dementia as if it is a disability that can be managed using tools, we can find ways to bring well-being,” said Peggy Budai, a nurse practitioner and clinical nurse specialist for older adults and palliative care for UCHealth in northern Colorado.
Budai, along with Adreanne Brungardt, care team navigator for Living Well with Dementia program at the UCHealth Seniors Clinic, provides these tools and insights on how to look differently at dementia, focusing on communication and connection.
The importance of seeking resources, continuously
Dementia is not a specific disease but rather an umbrella term used when someone’s ability to remember, think or make decisions interferes with doing everyday activities.
Studies show that caregivers of people with dementia are vulnerable to depression, burnout and negative health outcomes. Connecting to resources early in the journey can help.
“You have to find tools that apply to what you’re experiencing now because dementia is a progressive disease — a moving target — and that’s one of the most challenging things,” Brungardt said. “The name of the game is adapting and flexibility. And that can be hard.”
Seek local and community support
As a caregiver, start by talking with the primary care physician of the person with dementia to get the specifics about the diagnosis. Ask if the clinic offers a social worker or additional services for people with dementia.
“You need to know what you’re dealing with,” Brungardt said. “There are different types of dementia, so you need to know what to anticipate in the future. There are many resources globally, but being connected to local resources will help you tailor those resources to the different personality and family dynamics you’re dealing with.”
Brungardt and Budai recommend looking into having your loved one with dementia attend a Memory Café and consider joining a caregiver support group. Connecting with others facing similar situations combats feelings of isolation and provides emotional support.
Some favorite resources for dementia
With so many online resources available, it can be hard to know where to start.
Budai teaches the SPECAL method, created by Contented Dementia Trust and brought to the United States by Dementia Together. Budai teaches the SPECAL (pronounced “speckle”) method to UCHealth employees, and the public can attend a virtual class through Dementia Together.
Dementia Together has led the way in North America for introducing a simple, family-driven model to promote Contented Dementia, Budai said. This approach uses the framework of the SPECAL Photograph Album analogy to describe in a simple way how it feels to experience dementia.
“This model helps those of us without dementia work positively with dementia to promote lifelong well-being for loved ones living with dementia,” she said. “SPECAL helps us understand that, regardless of cause or variety of symptoms, dementia is best managed when we treat it as the simple disability of facts not storing efficiently anymore, while feelings continue to store in the same way as usual.”
Recent CSU research showed that family care partners experienced less stress and could more easily identify the positive aspects of caregiving after participating in a SPECAL course. The study is consistent with 30 years of global research on using the SPECAL method, which has resulted in increased empathy, harmony and resilience — exactly what many families need when striving to care well for a loved one with dementia, she said.
Brungardt has found “Dementia Careblazer” videos extremely helpful. A new video is released every week, created by a board-certified geropsychologist who specializes in working with families on handling challenging behaviors, managing stress, and discussing the latest treatment and research.
“These short videos by topic allow you to find information that applies to what you are experiencing now,” she said.
They also recommended the following dementia resources:
Caregiver Alliance: Provides resources available in specific states, as well as tips and self-care information.
ADEAR Center through the NIH National Institute on Aging: This government-created Alzheimer’s Disease Education and Referral Center answers questions, offers training and provides informational materials on specific dementias. There is also a link to clinical trials.
Positive Approach to Care enhances the life and relationships of those living with brain change by fostering an inclusive global community. Teepa Snow created the Hand-Under-Hand technique, which involves the caregiver placing their hand under the person’s hand so that the person with dementia can feel things are happening with them rather than to them when doing tasks such as putting on clothes or eating.
UCHealth classes and events include “Helping your loved one live well with Dementia,” “Effective community strategies for caregivers,” and “Understanding Alzheimer’s and Dementia.” Find what fits your needs and is in your area on the UCHealth Classes and Events page.
Think differently about dementia: Use these person-centered care methods
Elevate their finer qualities. Focus on the person’s finest qualities during their life and intentionally bring those moments to light during their day because people with dementia still have those longer-term memories stored.
“We can find ways to support well-being, like understanding how to recreate some of the best moments of their lives. What music did they love? What were they great at? Bring those things intentionally into their life so you are focusing on living every moment with positive intent,” Budai said.
Involve music. Music is stored in a part of our brain not impacted by dementia. If you know what music they love, they can sing along to those songs.
“The resource of music is underutilized,” Budai said. “We have an opportunity with music to connect with people with dementia and enhance their well-being.”
Look at communication through a different lens. “We may have talked with mom the same way for decades, and with a progressive illness that impacts a person’s ability to understand receptive language, it is all about the adaptation from the caregiver that will decrease their loved one’s frustration and ultimately decrease your frustration, making caregiving sustainable over time,” Brungardt said.
Adapt, adapt, adapt. A connection does not have to be through verbal communication. With someone with dementia, the meaning of communication will change over time, Brungardt said. At first, it might be conversations, but as the disease progresses, you can still connect in other ways, such as listening to music, dancing, holding hands or sitting and enjoying the same things.
“Nonverbal communication will supersede verbal communication,” Brungardt said. “They will feed off how information is given – your tone, body language – that will matter more and more.
Don’t contradict. Contradicting or arguing with whatever facts a person with dementia is using at that time to make sense of what is happening will only escalate negative feelings.
“In the disease process, the part of the brain that helps with reasoning and judgment has been damaged and is not functioning properly,” Brungardt said. “You are not going to win an argument.”
Instead of spending time and energy arguing about the facts, she suggests you get to the feelings and purpose of the statement. Instead, listen to them and focus on their feelings, forget about the facts, and join them where they are.
“Naturally, you want to correct them, but you need to be looking for de-escalation,” Brungardt said. “Arguing upsets us all, and it will ruin the moment… Facts don’t matter, it is more about engagement with them.”
Budai agreed and added, “It can be so hard not to use our reason and logic and correct them, but it is much more important to be kind than to ‘be right.’”
Along with the SPECAL method rules, Brungardt also recommends:
Reflect on the information you’re providing. If your loved one is not responding to a direction like you think they should be, it may be because of what you communicated. Did you provide too much information that needs to be simplified into steps? Did you provide too little information, and a simple descriptor or gesture would provide more information for them to understand the task? Or are you providing information that is too far in advance that they will not remember?
For example, “Go get ready for our walk” differs from “Here are your tennis shoes. Please put them on for our walk. (waiting) Grab your blue jacket from the closet (pointing at the closet).”
Layer on different communication methods as needed. Use verbal, visual (a smile, a point) and tactile (a touch) communication methods. Using these other methods helps you meet the person where they are in their stage of dementia. “Again, this falls on the caregiver to adapt,” Brungardt said.
Do an environmental scan. Confusion and frustration happen, and it can be disheartening when it feels like you have been very clear in your communication.
Brungardt said this calls for the caregiver to scan the environment. Do they have the attention of the person? Or is something else hindering their ability to attend the conversation, such as a loud television, a barking dog, or a messy room?
The caregiver should ask themselves, “Is there a better way to grab the person’s attention?” Maybe that is waiting for a different time, standing before them instead of behind, and making eye contact.
All behavior has meaning, Budai said. When someone with dementia shows agitation or distress, they aren’t trying to be disruptive. They are struggling to express unmet needs. They may be in pain, hungry or cold. “It helps us to be curious and do our best to meet their needs and be aware they may be having trouble communicating basic needs,” she said.
Take your time. Rushing someone with dementia can cause a lot of anxiety.
The word ‘dementia’ is still too often whispered, hidden, and misunderstood. The word comes from two Latin words meaning “separated from the mind.” Nothing about the word suggests separation from the heart and soul.
“The ‘tragedy narrative’ around dementia promotes fear, stigma and unnecessary isolation for those living with the condition and their care partners,” Budai said. “We hope to change the narrative from crisis and tragedy to contentment and hope.”
Don’t be afraid to ask for help. “The goal of these resources and advice is not only for the health and well-being of the person with dementia but also for the caregiver,” Brungardt said. “We want you to be self-sufficient and confident to manage future challenges and know where to turn to for additional help.”