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Dementia dramatically affects a person’s entire being, and its progression is impossible to stop. A person living with one of the various diseases that cause dementia may experience symptoms from memory loss to speech problems and vision decline, but the greatest complaints are boredom and loneliness.
Why do boredom and loneliness top the list? In most cases, caregivers (often, family members) are at a loss of how to provide dementia-related care. Dementia symptoms have changed the relationship between caregiver and loved one, and it’s common to feel at a loss of what to do. When you can no longer have a conversation with Mom like you used to, or Dad’s agitation has made visits with him feel negative, you might start to pull away. You visit the senior home less frequently, or your interactions with your loved start to become limited to basic personal care. And that’s the problem. Mom or Dad is still here. They still need love, engagement, and attention. It’s up to you to adjust your methods to connect with them in a new way. The care partner role demands lots of creativity.
Many family members who care for a loved one living with dementia experience difficult behaviors. Examples are struggling to get the patient to cooperate with eating and bathing, as well as sundowning-related problems such as agitation, paranoia, repetitive speech, and increased confusion in the afternoon or evening hours.
In a lot of cases, these challenging behaviors are a direct result of the person’s unchecked needs surrounding boredom and loneliness, which must be addressed in order to improve their quality of life. Let’s review some ways to feed these emotional needs.
William Thomas, MD, being convinced that loneliness and boredom are pandemic in long-term care facilities, founded the Eden Alternative, a program designed to promote the well-being of persons living with dementia. His practice focuses on what he calls the key domains to one’s well-being: identity, connectedness, security, autonomy, meaning, growth, and joy. Thomas encourages caregivers to think about how to fulfill each domain for the individual living with dementia.
Let’s use an example of someone who used to love painting: Her dementia symptoms include the loss of fine motor skills (i.e., she can’t hold a paint brush steadily), so an activity that used to bring her great joy and relaxation is no longer possible. This caregiver might try a couple creative approaches, such as spending time talking about paintings in a coffee table book, asking her to discuss how the artist achieved shadowing, etcetera. Or, the caregiver could provide paint supplies and ask her patient to teach her some basic painting skills. In both of these activities, the caregiver is engaging the patient in a topic of great interest, making her feel important, smart, and respected. And boom—you’ve attended to her well-being!
It’s important to know that each person uniquely experiences losses. The more you can dial in to the individual’s personality, past hobbies, and interest, the more successful you will be.
Dementia expert Teepa Snow teaches that most important thing to understand about meaningful activities is that a person with dementia needs more just entertainment. Activities like watching TV or having too many visitors may cause overstimulation and result in fatigue. Instead, there needs to be balance of four areas that are important for all human beings: work, self-care, leisure, and rest.
Snow also stresses that we must change our expectations as the disease progresses. What works today, might now work tomorrow—and that’s okay! Almost all persons living with dementia can be engaged in meaningful activity, even in late stages, so staying flexible and trying different approaches is critical.
Persons with dementia cannot make a schedule to live by, they cannot plan activities, they cannot solve the problems themselves. It is the job of those around them to do it for them. Activities as short as five or 10 minutes may have an emotional impact for as long as three hours! The benefits of improving well-being and reducing loneliness and boredom will significantly improve the quality of life for both persons with dementia and their care partners. Don’t give up on your loved one as dementia steals their abilities. Instead, discover what they still can do and help them enjoy each day to the fullest. Boredom be gone!
About the Author
Jill Smith, RN, is a PAC Certified Trainer and Consultant (Teepa Snow’s Positive Approach to Care), a Dementia CARES® Specialist (Alzheimer’s Association), certified with the International Council of Montessori Dementia Professionals, and active on the National Council of Certified Dementia Practitioners.
Living With Dementia, a Hope Hospice Program
Hope Hospice offers complimentary Living With Dementia classes that provide education and support to family caregivers, regardless of whether the loved one is on our service.