People with dementia are often unable to keep themselves occupied because of the effects of the disease. They may not be able to call to mind the possible things to do in any given moment. If they can think of things to do, they may not be able to figure out the sequence of steps to accomplish the goal. They may not be able to initiate an action, or the tasks needed to find and gather supplies or tools may be overwhelming. However, individuals with cognitive impairment need stimulation and challenge to retain remaining function as long as possible, to improve or retain self-esteem, and to retain or improve quality of life.
In a residential setting, the person with dementia has the opportunity to watch others’ behavior or to interact with others in their environment. They can be invited to a group activity conducted by one caregiver, while others prepare for a meal or attend to individual needs. In a family setting, the caregiver may be occupied with housekeeping and meal preparation, while the affected person sits idly by. In either case, the television can be an easy substitute for interaction and stimulation, but it, too, can become isolating and tedious when overused.
As with any aspect of dementia care, knowledge of the person and of the disease process is essential in designing and carrying out effective activities. The project should be meaningful to the participant, often relating to hobbies, interests, or vocation from earlier in life. The goal of the activity is engaged enjoyment, rather than achievement of a purpose or product. Sometimes that’s hard to gauge in a person with dementia. If the person is willingly participating and gives sustained attention, it’s probably a success. Asking questions, reminiscing, staying on task, looking for appropriate items or pieces, erect body posture, appropriate bodily movements, or an intent or relaxed facial expression are all indicators of engagement. The signs of engagement may be very subtle. In a dementia residence in which a singer was performing Elvis Presley songs, I watched a woman sitting glumly in her chair with her head down. I thought that the music was lost on her, until I noticed that her toe was keeping time to the rhythm. I caught her eye and smiled, then started singing. She began singing with me!
Don’t expect the same activity to be well received every time. A repertoire of pastimes is needed to meet the person where they are at the moment. Because of a bad night, an activity which requires more concentration may not be fitting. The time of day can dictate the appropriateness of a given pursuit. Some people are more energetic in the morning, while others take much longer to get going. Late afternoon and early evening may be a time for soothing music and a back rub, especially if the person is prone to the agitation that comes with sundowning. What was a favorite activity for a long time, can become frustrating a year or so later when the disease has progressed and the person’s abilities have changed. That activity may need to be broken down in to smaller, doable steps or modified so that the challenge is lessened.
Even though persons with dementia have limited abilities, they have the need to feel useful and contributing. Introducing ways that they can make a contribution helps maintain their sense of self esteem and self worth. Drawing on skills cultivated in the past, a person may be able to put stamps on envelopes, to fold clean clothing, to set the table, to sand wood, to mix cake batter, to cut out coupons, to sort objects or other aspects of daily life. The caregiver needs to remember that the process is what is primary. If the folded clothing are not as neat or the fork and knife are not placed properly on the table, that’s immaterial if the person enjoyed the task and felt useful. Knowing the person and the disease process also helps assess the safety of the process. One person with dementia may be able to use scissors or a paring knife, while another person, or the same person in later stages of the illness, may not be able to do so safely.
We all relate to the different aspects of our selves: physical, intellectual, emotional, social, and spiritual. Persons who suffer cognitive impairment also possess all of those human elements. Accordingly, they need opportunities to connect with and express those parts of themselves. Again, the ways that they did so in the past can guide the caregiver to devising experiences that will be meaningful in the present. If the person had been a churchgoer, forms of spirituality that the individual encountered in church will probably touch him or her, such as formal prayer, rituals related to religious observances, and religious holiday traditions. Others may find spiritual fulfillment in photos of nature, poetry, or music. The physical self can be addressed through sensory stimulation (such as aroma therapy, viewing art, tasting various foods, or a hand massage), through exercise appropriate to the person’s abilities, or through gardening or tending house plants.
The emotional aspect of self can be engaged while viewing and discussing an epic film, such as Gone With the Wind, through listening to a good story, and through reminiscing about family or important milestones in the past. Social needs can be met by participating in an adult day program, having a visit from friends or family members, looking at family albums or video while talking about the people depicted, or playing with a pet. And intellect can be stimulated during all of the above activities, as well as puzzles, card games, sorting objects, discussing the news, playing trivia games, making crafts, or doing art.
Persons with dementia seem to be particularly attuned to music and art, perhaps because these stimuli are processed more by the right hemisphere and sub-cortical brain structures. Their enjoyment is also non-verbal and subjective. It is not uncommon to find that a cognitively impaired person who had been a musician but can now barely speak, can still sit at the piano or other instrument and play nearly as well as in the past. Or to encounter an individual who had not spoken for some time singing along with a favorite tune from the past. Persons with dementia, who had not seemed particularly artistic in earlier life, can become avid artists after discovering painting or collage or pottery in later years. When given an iPod, Henry’s response to music is remarkable, as recorded in the YouTube video, narrated by Oliver Sacks: http://www.youtube.com/watch?v=5FWn4JB2YLU
Teepa Snow has published a useful essay, “Activities for People With Dementia”, which includes good points on matching the task to the individual and sample activity schedules for three demented individuals with different needs and abilities. Another helpful resource is a brochure from the Alzheimer’s Association called “Activities at Home”, which offers good advice on activity planning. By using imagination and forethought, there are thousands of things a caregiver can do to engage a person with cognitive impairment. This link from the Alzheimer’s Association can get you started, with “101 Activities”.
Like Henry, persons dealing with cognitive impairment often have areas of ability that are preserved but undetected. They have talents and awareness that are not expressed because there is no opportunity for them to appear. There is still a human soul “in there”, and our efforts to engage the whole person can reward us with startling glimpses of the person that remains and the spark of life that animates all of us. Sue Sweeney, Chair, Gerontology Department, Madonna University