Addressing the Lived Experience of Community Dwelling Older Adults with Dementia

By Alita Borkar, MA, OTR/L, CPAM & Savanna M. Ivill Grife, MS, OTR/L

The World Health Organization estimates that approximately 55 million people currently live with dementia and 10 million cases are diagnosed every year. Depending on their stage on the Global Deterioration Scale, individuals with dementia may have difficulty socializing, communicating, and performing instrumental or activities of daily living. At all stages, occupational therapists are in a prime position to address these impairments and maximize individuals’ daily function and quality of life. 

People with dementia, particularly of an earlier stage, often do have insight into their condition and are aware of changes occurring within them and around them as a result of the disease. Therefore, it is important to first understand their lived experience to best capture their functional impairments and develop a salient, motivating, and patient-centered plan of care. 

Here are four common themes that emerged within the literature on the lived experience of people with dementia and how it may be addressed within occupational therapy scope of practice. 

1. Emotional Challenges

Starting in the early stages of dementia, people feel their life being “torn” apart due to losing the ability to partake in their hobbies, daily routine, and meaningful work on their own. It is stressful having to adapt to a different way of doing things e.g. a new set of rules and costs for old routines. People feel that it takes time to adapt, while feeling like time is being lost. It feels possible to learn, yet challenging because the information keeps getting lost. It becomes difficult to cope with this memory loss, causing insecurity, shame, and fear. Therefore, people develop maladaptive self-protecting strategies like secrecy and distancing. 

Occupational therapists can address these emotional challenges by using therapeutic use of self to aid people in disclosure, changing the patient narrative of being “unintelligent” and providing education to build acceptance of the disease process.

When self-limiting feelings arise, OTs can teach healthy coping skills such as humor or distraction with enjoyable activities and conversations. Dance/music interventions provide sensory input and movement to reduce agitation. Narrative and task procedural memory building can be completed early in the disease process through memory book creation and other art forms. For example, choice of materials and projects can aid in memory and attention retention: “one participant [took a] creative spin on the ingredients he had in mind for the ‘filling’ of his traditional cakes” to practice meal preparation skills while remembering family traditions.

Occupational therapists also utilize strategies such as backward chaining, visual cues, one-step written directions and caregiver training to aid in memory for routines. Occupational therapists provide resources, such as grant options, to aid in costs associated with these routine changes.

2. Loss of Autonomy and Self-Esteem

People with dementia experience sudden driving cessation and family and friends taking over their daily routines, decisions and community engagement leading them to feel a loss of control, unsafe, increased disability and burdensome. People with dementia default to combativeness in later stages of the disease, not only because of declining executive functioning, but in an attempt to stand up for themselves when autonomy feels lost.

To avoid this loss of autonomy and self-esteem, OTs educate and train in alternative forms of transportation e.g. rideshare options, public transportation, taking alternative roads, walking with voice activated GPS, or letting a family member drive to retain the sense of fun, freedom, travel and ability to leave the house.

Caregivers are trained to modify daily routine tasks and community engagement activities with appropriate set up of materials, landmark and familiar object training, and limited choices provided to their loved one with dementia e.g. picking outfits out, choosing what to eat. The home is modified with assistive technology and made accessible e.g. big button/colorful remotes, calendars to orient to date/time/weather, medication alarms, auto oven shut off devices, fall alert necklaces, brightly colored labels to avoid misplacement of objects. 

Occupational therapists advocate in their communities for universal design options that can promote community engagement e.g. improving visibility with color contrasting signs, reducing noise feedback in buildings. Self-advocacy is a skill that is taught as a healthy alternative to combativeness. Poetry may be a meaningful occupation introduced as a way to build self-efficacy and personal growth. 

3. Lack of Social Engagement and Connectivity

Individuals with dementia commonly report difficulty maintaining or engaging in social participation with friends and family both in and outside of public situations. Sometimes this challenge is related to the social skill demands of maintaining relationships, while other times individuals experience anxiety within the social environment and “risk embarrassment in public spaces.” Opportunities for social and leisure engagement tend to be even more limited as they experience driving cessation and are often confined to their home. 

To address feelings of social and spiritual dysconnectivity in people with dementia, occupational therapists educate patients and caregivers about resources such as support groups, senior centers, and religious events to facilitate occupational engagement in a social environment, which may include a virtual context. It is within the occupational therapy scope of practice to train patients in use of technology (if skilled as well as cognitively and functionally appropriate) to stay in touch and connect with medical professionals and loved ones using devices such as digital photo frames, tablets, smart devices with voice commands, and video calling. The involvement in online communities creates a positive experience and “may require less instant cooperation and feedback than in-person community-based activities.”

In addition, engagement in outdoor activities has been widely shown to improve patients’ feelings of connectivity. Patients consider the outdoors to be “arenas for social activities and an essential source for sustaining identity.” Individuals with dementia who took part in an outdoor gardening program expressed how the experience offered them an opportunity to reconnect with a part of their identity that had faded since living with dementia, as well as to connect with others who share a mutual interest in gardening rather than focus on a mutual diagnosis. Therefore, occupational therapists may wish to conduct treatment sessions outdoors on a nice day or collaborate with the patient and caregiver to determine safe and enjoyable outdoor activities with which the patient may take part. Engagement in forms of group-based artistic activities such as stand-up comedy and songwriting have also been shown to promote positive social engagement among people with dementia. 

It has been demonstrated that through active or passive participation in a comedy workshop, adults with dementia reported positive social experiences and increased socialization. It has further been discovered that songwriting about caregiver experiences can help in improving relationships with the caregiver, group members, leading to personal growth. 

4. Loss of Purpose

As people progress in their journey with dementia, they undergo a stress-inducing transition out of purposeful activity. Whether it be cessation of employment, voluntary work, or general engagement in daily occupations, lack of meaningful, valuable and purposeful activity deprives people with dementia of fulfilling their fundamental psychological needs. In turn, these individuals experience a tragic loss of purpose, occupational deprivation and reduced quality of life. 

The unique value of occupational therapy in addressing this issue is to comprehensively assess the patient to uncover their interests and hone in on their strengths to establish or restore an enjoyable and purposeful activity that is appropriate to their cognitive functioning. When developing an occupational profile on patients with dementia, clinicians can recommend volunteer opportunities such as making cards or writing letters that may promote a sense of purpose and meaning in an individual’s life. In addition, including pets in the lives of individuals with dementia creates an environment that fosters a renewed sense of purpose. With prompting and supervision from caregivers, people with dementia may benefit from a task such as feeding fish, playing with a dog, or brushing a cat. 

Community dwelling older adults with dementia experience emotional challenges, loss of autonomy, connectivity, and purpose. Addressing the lived experience of this population is important in maximizing quality of life and preventing deterioration of meaningful functional and social participation to avoid depression, need for assisted living, and hospitalizations. 

A comprehensive assessment including interviewing, therapeutic use of self, and diverse interventions including social groups, the arts, outdoor activities and routine modifications may help in reducing the negative impact of dementia. It is occupational therapy’s role to intervene at the patient, caregiver, and community levels to achieve this.