How to keep dementia from robbing your loved ones of their sense of personhood – tips for caregivers

R. Amanda Cooper, University of Connecticut Every three seconds, someone in the world develops dementia. There are over 6 million people living with dementia in the U.S. and 57 million globally. These figures will only increase in the coming years, as rates of dementia are predicted to double by 2060. If you don’t know someone affected by dementia, you probably will at some point. Dementia is incredibly difficult both for the person experiencing it and for their loved ones, not only because of the symptoms of the disease but also because of the social stigma associated with cognitive decline. Experiencing stigma makes it difficult for people with dementia to ask for help, increases anxiety and depression, and ultimately leads to social isolation. Dementia-related stigma is perpetuated through media messages that portray people with dementia as mindless and incapable, as well as through daily interactions in which others dismiss and dehumanize the person living with dementia. These forms of invalidation – usually unintentional – accelerate and intensify the loss of self-worth and identity that dementia patients are already experiencing. Fortunately, educating and spreading awareness can help reduce behaviors that propagate stigma and dehumanizing treatment of people with dementia. As a social scientist and researcher in interpersonal communication and family caregiving, I explore the social and relational side of dementia. Through my work with these patients and families, I’ve learned that reducing stigma and supporting self-worth for people who have dementia is often done through daily conversations.

How is dementia defined?

Dementia is an umbrella term that refers to a family of cognitive conditions involving memory loss, difficulty thinking or processing information, changes in ability to communicate and challenges with managing daily tasks. The most common form of dementia is Alzheimer’s disease, but there are several other forms of dementia that can severely affect a person’s quality of life and that of their loved ones. Most forms of dementia are progressive, meaning that the symptoms of the disease get steadily worse over time. A person with dementia can live with the disease for several years, and their symptoms will shift as the disease progresses. People in the early stages of dementia, including mild cognitive impairment, continue to engage socially and participate in many of the activities they have always done. In the middle stage of the disease, people often need more help from others to complete daily tasks and may have more difficulty holding conversations. In the late stage, people with dementia are dependent on others and often lose the ability to communicate verbally. Despite the cognitive declines that come with dementia, people living with dementia can maintain many of their former abilities as the disease progresses. Even in the late stages, research shows that people with dementia can understand tone of voice and nonverbal communication such as body language, facial expressions and gentle touch. This makes it clear that people with dementia can continue having meaningful social connections and a sense of self-worth even as their disease progresses.

Focusing care around the person

In the 1990s, psychologist Tom Kitwood, who studied dementia patients in long-term care settings, introduced the notion of “personhood.” Personhood is a recognition of a person’s unique experiences and individual worth. He had observed that residents with dementia were sometimes treated as objects rather than people and were dismissed as being “no longer there” mentally. In response, Kitwood advocated for a new model of person-centered care. In contrast to the medical model of care that was standard at the time, person-centered care aims to provide people with dementia comfort, attachment, inclusion, occupation and identity. Comfort includes both physical and psychological comfort, ensuring that the person with dementia feels safe and is as pain-free as possible. Attachment and inclusion have to do with supporting a person with dementia’s closest relationships and making sure they feel included in social activities. Occupation is about giving the person meaningful activities that are suited to their abilities, while identity is about preserving their unique sense of self. According to Kitwood, each of these elements of personhood can be upheld or threatened through a person’s interactions with others. I find Kitwood’s work particularly important because it suggests that communication is at the heart of personhood.

Communicating to support personhood

So how can family members and friends communicate with their loved one with dementia to help preserve their sense of self? Researchers have identified several evidence-based communication strategies that support person-centered care both in long-term care settings and within the family. These include:

• Arranging the environment to support conversation. Have conversations in a quiet place with as few distractions as possible, sit at eye level and close to the person, make eye contact and use gestures to reinforce what you say.
• Acknowledging the person with dementia as a unique individual. Helping your loved one remember who they were before dementia is critical to supporting their sense of self-worth. In long-term care, this is done by greeting them, calling them by name and integrating their past experiences into conversations. In families, it is done by inviting the person to reminisce about their past or reminiscing together and by talking about their accomplishments and admirable qualities.
• Affirming and validating the person’s emotions. Even if you don’t understand what the person is thinking or feeling, avoid correcting them and instead acknowledge their underlying emotion.
• Seeking the person’s input about their care. This includes asking about their preferences for food or activities, usually using simple “yes” or “no” questions, and asking their permission before helping them with physical care such as bathing, moving or changing clothes.
• Using simple prompts to help the person successfully engage in conversation. This can be done through repeating or rephrasing questions, paraphrasing the person’s responses, pausing to give the person time to think, and providing simple prompts to help the person remember.
• Creating and maintaining connection. In families, this is done by giving a hug or kiss or saying “I love you”; doing activities together such as playing simple games, making art or playing music; and joking around and laughing together.

Communication shifts as the disease progresses

Supporting personhood requires adjusting to the communication abilities of the person with dementia. Some communication strategies are helpful in one stage of the disease but not in others. In a recent study, my team and I found that asking the person with dementia to recall the past was affirming for those who were early in the disease and who could still recall the past. But for people who were in later stages of the disease, asking them “Do you remember?” was received more like a test of memory and led to frustration or confusion. Similarly, we found that suggesting words to prompt recall was helpful later in the disease but demeaning for people who were in earlier stages of the disease who could still find their words without help. Providing more help in conversation than is needed can lead people with dementia to withdraw, whereas appropriately adjusting to a person’s communication abilities can empower them to continue to engage socially. Ultimately, supporting a person with dementia’s sense of self and self-worth in conversations is about finding a communication sweet spot – in other words, matching your approach to their current capabilities. Changing your default approach to conversations can be challenging, but making simple communication changes can make all the difference. Meaningful conversations are the key to helping your loved one live their days to the fullest, with a sense of personal worth and a feeling of meaningful connection with others. R. Amanda Cooper, Assistant Professor of Communication, University of Connecticut This article is republished from The Conversation under a Creative Commons license. Read the original article.

What to Give Someone With Cancer: Skip Fuzzy Socks, Give Practical Help Instead

Ellen T. Meiser, University of Hawaii at Hilo The season of gifting is in full swing – a time when people scour the internet and shops of all kinds for items that appropriately symbolize their relationships with their loved ones. Gift givers hope that their gift will appropriately communicate their feelings and bring the recipient joy. But that’s not always the reality. Gifts can be tricky and rife with hidden hazards. Relationships can even be ruined when the mismatch between the giver’s intention and the recipient’s perceptions of it is too vast. The circumstances of the people involved also shape a gift’s meaning and the way it might be interpreted. My research partner, Nathalie Rita, and I have been seeking to better understand gifting in one of life’s most dicey, distressing circumstances: cancer. As sociologists, we use techniques such as in-depth interviews to study the experiences, feelings and motivations of specific groups of people. I focus on restaurant workers and my colleague on migrants and minorities. But in 2021, we were both diagnosed with cancer in our early 30s – breast cancer for me and endometrial cancer for her. This encouraged us to explore the experiences of other young women dealing with cancer. By 2023, we had interviewed 50 millennial women diagnosed with cancer about a plethora of social and emotional topics related to their illness. Our own bouts with cancer revealed curious patterns in the gifts we very gratefully received from family and friends. So, we included a few questions about gifts in our research. We expected some eccentric anecdotes similar to our own experiences. But our research, which isn’t yet published, revealed just how much of a mismatch there is between what people wanted and what they received – often driven by the marketing of specific gifts or care packages for cancer patients.

What loved ones give

One of our first questions was, what exactly do women diagnosed with cancer receive from their loved ones? Their answers ran the gamut. Our interviewees reported hundreds of gifts, from stuffed possums to child care help to Vitamix blenders. Friends and family were very eager to shower them in goods. But from these hundreds of items and acts, 10 popped up over and over again. In order of frequency, they were:

1. Fuzzy socks.
2. Food and drinks, particularly herbal teas, groceries, gourmet goodies and Meal Trains.
3. Money, GoFundMe donations and gift cards.
4. Blankets.
5. Fancy, spa-style self-care items.
6. Written thoughts and prayers.
7. Flowers and plants.
8. Mugs, tumblers and bottles.
9. Adult coloring books.
10. Books.

The women we spoke with largely understood and appreciated the intentions behind these items in the context of their illness: books to distract, flowers to beautify. They viewed the gifts as material proof that their loved ones wanted to deliver comfort and support in a time of discomfort and helplessness. But the frequency of certain items perplexed us. Why socks and coloring books instead of, say, Rollerblades and bongs?

The long shadow of online commerce and gift guides

We traced these gifting trends to two sources: premade cancer care packages and online gift guides. Numerous women reported receiving some of the items from our top 10 list in premade care packages sourced from Etsy, Amazon or cancer-specific companies such as Rock the Treatment and The Balm Box. They noted that the contents of these packages felt predictable: spa-style self-care goods such as aromatherapy oils, lip balms and soy candles; herbal teas; a mug with a slogan or ribbon; and hard candies or throat lozenges. Some received more opulent care packages, similar to Rock the Treatment’s large chemo care package for women, which adds adult coloring books, protein-rich snacks, a beanie and fuzzy socks. These additions mirror our interviewees’ top 10 received gifts even more closely. Online gift guides published by magazines, news sites and stores may be influencing gifters’ behaviors, too. A Google search for “gift guide” yields countless lists for niche demographics – chicken lovers, mathematicians, even people who are always cold. Online viewership of these lists is prolific. For example, New York Magazine’s product recommendation site, The Strategist, received 10.7 million monthly views in 2021. The top seven Google-ranked gift guides for cancer patients also contain suggestions that align almost perfectly with what our interviewees reported, with the addition of clothing and jewelry emblazoned with inspirational declarations such as “I’m stronger than cancer!” These overlaps reflect the broader phenomena of the commodification and commercialization of cancer. As businesses seek to extract economic value out of all aspects of daily life, cancer has become a lucrative business opportunity and patients a source of profit. Our research suggests that these market forces warp how gift givers perceive people with cancer and their desires. In turning cancer into something profitable, the ugly parts of illness are also glossed over to make cancer palatable to the market. Businesses then sell would-be gifters the idea that cancer can be assuaged by purchasing and giving a bejeweled, teal-ribboned Stanley tumbler. Additionally, while premade care packages ease the labor of decision-making for gifters, they run a greater risk of disappointing recipients. These generic boxes, we found, can communicate a degree of thoughtlessness at a time when our study participants were aching for thoughtfulness.

What to actually gift

So, what do women going through cancer treatment actually want to receive? Our interviewees recommended:

1. Money in the form of cash or useful gift cards, such as for Door Dash, grocery stores and Petco.
2. Meals and groceries, particularly if the recipient is a parent with mouths to feed.
3. Help with errands and tasks such as babysitting, transportation, cleaning and lawn care.
4. Cards and personal messages of love, which serve as check-ins and gestures of care and support.
5. Practical self-care items such as thick lotions, face masks and soft soaps that don’t irritate skin.

Pragmatic. Simple. Even a little mundane. There is some overlap between these recommendations and the frequently received gifts mentioned earlier. But notably, almost none of the women we interviewed expressed a desire for the nonessential items usually stocked in commercial care packages or those associated with profiting from cancer. Instead, the gifts they felt touched them more deeply were ones that addressed ways in which they felt the disease incapacitated their abilities as a worker, woman, mother or caregiver. Our interviewees spoke of financial strain from medical bills, fatigue preventing them from mothering in ways they used to, and mounting burdens that made it almost impossible to be present for partners or spouses. A monstera plant in a whimsical vase offered little reprieve from these pressures. However, a chat while folding laundry or a Pyrex of enchiladas did. Perhaps most importantly, such offerings made them feel cared for and seen – their unvarnished circumstances recognized. So, if a friend with cancer – or any other serious illness, for that matter – is on your list this holiday season, consider hanging those fuzzy socks back on the rack. Instead, mull over their daily stresses, and choose an item – or a task – that provides a bit of relief. Ellen T. Meiser, Assistant Professor of Sociology, University of Hawaii at Hilo This article is republished from The Conversation under a Creative Commons license. Read the original article.