What to Know: Caregiving for Those with Dementia-Related Cognitive Impairment
Pamela Mills
Pamela Mills, Ingleside’s Director of Memory Programming addresses some common questions in a four-part series.
Part 1
What challenges do people face when caring for a friend or family member with dementia-related cognitive impairment?
Assisting a person with a dementia-related cognitive disease can be an all-encompassing life experience that can be gratifying, but also extremely stressful. There is no easy method to being a caregiver, as this disease is filled with loss, change, emotional strain, physical tasks and often overwhelming choices. Caregivers of people with dementia often feel alone, overwhelmed and cut off from the world.
For the person experiencing cognitive decline, he or she has their own grief, fears and frustrations, which is why it is equally important that both the caregiver and person with the diagnosis actively engage in support groups and other resource services.
The stress usually increases when trying to balance caregiving along with the multiple pressing responsibilities of daily life, such as a job or raising children. They struggle in the attempt to accomplish day to day tasks while navigating the difficult decisions ahead. When the care recipient requires around-the-clock assistance, caregivers are frequently challenged by their own need to sleep, eat and maintain their own health. They may not ask for help, but could be secretly wishing for a few moments for themselves to be without worry. There is also the emotional pain of seeing the person in the process of decline.
Another challenge is attempting to maintain a social life outside of the home. Persons with cognitive decline frequently become increasingly unable to tolerate and participate within social situations. He or she may no longer wish to go to a favorite restaurant because the menu is overwhelming or the environment too noisy. He or she may also struggle to participate in conversations and may seek to avoid them. Both partners are also increasingly concerned with the stigma of the disease. Often people are unaware of how to maintain a normal friendship with a person who has cognitive decline, whereupon they may distance themselves from the formerly strong relationship.
Overall, the main challenge for all persons experiencing the world of dementia, is maintaining a sense of normalcy and continue to thrive within both our relationship and the world at large.
Part 2
How do you help if you know someone going through this experience?
If you know someone who is living this experience, please get involved. Ask how you can help. Perhaps go to the Dementia Friendly America website and take the quick training on how to be dementia friendly. Encourage your neighbors and friends to do the same.
Offer to assist in small manageable ways, such as picking up a few groceries the next time you are at the store, stopping by as a “friendly visitor” for an hour so the loved one can have time to their self, or offer to assist with any other household task that would allay the stress. The more support systems and resources that we (as friends, neighbors, merchants and community members of persons with dementia) build within the community for persons who are care partners, the lesser their challenges will be moment by moment.
Part 3
What should people look for when researching a day or evening program for someone with dementia-related cognitive impairment?
One of the most unfortunate similarities between caregivers and persons with dementia is that post-diagnosis, their world seemingly becomes smaller and smaller. For the person with dementia, they can experience discomfort with highly stimulating environments (e.g. restaurants, shopping malls, large events, etc.). Communication impairments may make the person with dementia more self-conscious around their friends, as the disease affects a person’s ability to engage in conversation, limits inhibition as well as the ability to remember details or follow a standard social cue. This often eliminates former socialization or leisure interests. Likewise, the caregiver also may no longer feel comfortable or have time for maintaining friendships. Therefore, just the idea of going out for a meal with lifelong friends becomes increasingly difficult.
Social day and evening programs can help a person thrive by continually being a resource for caregivers to learn about better ways to be with their loved one. Wellness approaches to supporting a person with dementia include programming for physical, contributory, cognitive, creative and social experiences. All of which have been noted by neurologists to potentially ease the progression of the disease within its earlier stages.
Those offering these programs, such as our Ingleside Engaged Program, can be resources for learning as well as respite. We help the person with dementia find creative ways to express themselves, remain engaged in life activities and “let the words come” when communication begins to breakdown due to the disease progression.
Ingleside Engaged can provide daily moments of respite that each caregiver not only yearns for, but also needs for their own health and wellbeing. We are an advocate and conduit to thriving beyond the diagnosis. We have found that the person with dementia profoundly benefits from a day program because programs such as this help people navigate their more successfully while also maintaining an engaged purpose within their lives.
Part 4
My days can become quite sporadic with my loved one. Are these programs flexible?
Yes, Ingleside Engaged offers a fully flexible schedule, as we know dementia does not always adhere to a standard schedule. If a person wants to come for two hours, two days a week or for six hours, five days a week, they can. We offer opportunities for our schedule to be flexible around each person’s preferred schedule. We cherish each moment, navigating the daily program flexibly and creatively within the person’s best abilities.
For more information about Ingleside Engaged, call 240-205-7085 or visit here.
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