Tag Archives: dementia care

Ways to Engage Persons With Dementia

Art suppliesPeople 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

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Older Drivers

WPRBetaTaglineI was interviewed recently by Wisconsin Public Radio on the topic of older drivers.  There is a bill in the Wisconsin state legislature to require drivers over age 75 to renew their license more often than younger drivers.  Families so often struggle with discussing driving with older relatives because it’s such an important ability to quality of life and because public transportation is so limited, especially in rural areas.  Here’s the description of the piecehttp://www.wpr.org/challenges-elderly-driving  You can download the audio or listen online from that same link.

Driving is  an important issue for older adults and their families for many reasons.  Older adults more often suffer severe injury and death when involved in vehicle accidents, because of age-related physical changes and chronic illness.  Accident prevention is therefore an urgent goal.  There are a number of helpful Web pages on driving in later life.  AARP has a driver safety page on their site, which highlights their driver safety course for senior drivers, offered both online and face to face.  The course costs between $16 and $20 depending on whether the person is an AARP member.   I have my students take the We Need to Talk online seminar on the same AARP page, which discusses when to stop driving and how to discuss driving cessation with older drivers.  It helps them to have a more empathic view of driving and understand what driving means to people, beyond just getting from point A to point B.

CarFit is an organization that provides events in which older drivers bring their vehicle, and trained volunteers assess how to better fit the car to the needs and limitations of the driver.  While not every area of the U.S. is covered by these events, the Web site has a number of videos that illustrate proper alignment or fit of the driver to the car, such as the optimal distance between the steering wheel and the driver’s chest to prevent or minimize injury from an airbag, mirror adjustment for effective view of the side and rear, or the minimum distance needed of the line-of-sight above the steering wheel for a safe view of the road.

The Hartford Insurance Company has a very useful Web site on Family Conversations With Older Drivers.    The site offers conversation starters, conversation planners, a Warning Signs Worksheet, information on driving evaluation, a worksheet to evaluate transportation alternatives, and other helpful information.  The company also provides quite a few free guidebooks with information on a number of aspects of driving, in both electronic and paper form.

The American Medical Association has resources for physicians on older drivers, including a Web-based educational course called “Medical Fitness to Drive:  Is Your Patient at Risk?” and a “Physician’s Guide to Assessing and Counseling Older Drivers –  2010 Edition”, developed with the National Highway Traffic Safety Administration.  The Guide can be downloaded and has information useful to professionals and consumers.

Finally, the National Highway Traffic Safety Administration has an Older Drivers Education Web page with electronic brochures on adapting vehicles, conversations with older drivers, safe driving, and driving transition.

With the Baby Boom generation aging, there will be more and more older drivers on the road.  We need to be both sensitive and sensible so that the safety of everyone on the highway is optimized while the rights and quality of life of the older drivers are preserved as long as possible.  It’s gratifying that there are so many resources available to help us address the issue in informed and compassionate ways.  Sue Sweeney, Chair, Gerontology Department, Madonna University

Inner Work of Dementia Caregiving

NautilusXSectionI wrote this essay a few years ago, but I think it’s still very relevant.  I recently read that it’s most often the caregiver that needs to change in order to make the arrangement work, rather than the care receiver.  That’s even more salient when the care receiver experiences dementia.  The inner work of dementia caregiving relates to the techniques and approaches that one can use to be less stressed and more open to the experiences that such caregiving affords.

The Inner Work of Dementia Caregiving

Caring for a person with dementia provides an opportunity for considerable inner work.  Since the caregiver often has little external control over much of the caregiving context, working with oneself to stretch capabilities and improve coping allows for some amount of control internally.  In addition, the caregiving context can be reframed as something of benefit to the caregiver, when the caregiver commits to internal personal growth goals.

These goals may include such outcomes as increased patience, improved observational skills, enhanced empathy, increased compassion, greater psychological endurance, enhanced self esteem, improved self-control, greater self knowledge, better limit setting, assertiveness, increased ability to be in the moment, beneficial use of humor, better delineation of self versus other, ability to use perspective effectively, overcoming traumas of the past, inner balance and centering, spiritual connection, effective use of self-expression, and surrender to a Higher Power.  When these benefits are recognized and cultivated, the caregiver can credit her- or himself with the achievements attained in this arena, in addition to the benefit of care to the care receiver.

One might argue that dementia caregiving is hard enough.  Why add another layer of effort to the endeavor?  Because the attainment of these inner goals directly improves a person’s ability to cope with the caregiving, and any challenging situation for the rest of her or his life!   I would assert that improvement in any of these areas is likely to enhance the caregiver’s quality of life overall.  The following are more concrete examples of how these inner talents can be cultivated and used:

  • If you find yourself feeling impatient, angry, and resentful with the care receiver for more than a few minutes at a time, this is an indicator that you are out of balance in giving and receiving (inner balance and centering).  You need to do some things for yourself that will equal the flow of your energy going out.  There are numerous ways to do this.  If you can’t find someone to relieve you right now, as soon as possible find a safe context for the care receiver, and give yourself a momentary break.  Take deep breaths.  Go outside for a few minutes or go in the bathroom and cry or be your own cheerleader and point out how much you have accomplished or play a favorite song or do a few yoga postures or listen to a few minutes of a meditation tape or call a friend for moral support or have a healthy snack… whatever is satisfying for you.  Then take a few more deep breaths and return to the caregiving situation.
  • If you’re feeling overwhelmed by the events of the day try to find humor in the absurdity of it all (beneficial use of humor) or use perspective to help you cope (effective use of perspective).  If the present moment seems pleasant, focus in on your immediate experience and savor every aspect of it.  For example, if the you and the care receiver are eating a tasty lunch, focus in on the experience.  Smell the aroma of the food; taste all the nuances of flavor; enjoy the care receiver’s absorption in eating and pleasure in the food; appreciate the opportunity to sit down and relax.  Really take in the benefit of that moment before you turn to resolving problems.  If the present moment seems chaotic, focus on the bigger picture, such as how you are keeping your loved one in a safe and caring environment or only having another day before you get a break or how you’re growing from the experience.  If you’re overwhelmed with the immediate situation, do what is immediately necessary for the safety of the care receiver and yourself, then focus in on each step, and celebrate accomplishing each piece of the bigger challenge.  Or ask for guidance and inspiration, and open your mind with expectation and confidence.  Often a helpful idea will emerge that puts things in a different light or provides a creative approach to the situation (spiritual connection).
  • Sometimes you’re dealing with situations that result from the long term life choices of the care receiver.  It’s tempting to feel that, as caregiver, you should fix it all.  However, it’s unrealistic and unfair to expect that you can correct the outcome of a person’s life.  For example, if the care receiver didn’t use their funds wisely, you cannot be expected to use up your retirement savings to provide for their care.  If the care receiver was difficult to get along with and alienated friends and family members, you cannot be expected to relieve the person’s loneliness (limit setting, delineation of self versus other).  You can be compassionate, supportive, and helpful, within the means that you can spare.  And that’s enough!
  • If you’re reluctant to receive help from others, ask yourself why you’re not taking advantage of the opportunity (self knowledge).  Is your self-esteem dependent on the caregiving role?  Do you believe no one else can do it as well?  Do you want to be special to the care receiver?  Are you trying to solely control the care receiver’s care?  Have you lost touch with other aspects of yourself and your life?  Are you swinging between the negative poles of guilt and resentment?  What is the cost of these attitudes, to you, to the person offering to help, and to the care receiver?

Committing to inner work as a caregiver helps to shift the locus of control from the care receiver and her or his needs and wants to the caregiver and her or his goals for personal growth.  The caregiving relationship needs to work for all parties concerned.  There needs to be reciprocity in the relationship and a balance in giving and receiving.  A person with dementia often cannot directly express her or his appreciation or gratitude, so that avenue of reciprocity may not be available.  The caregiver, then, must be able to recognize the benefit to the care receiver resulting from her or his care, as well as to discern the present and future benefits to the caregiver from undertaking the care of another.  Consciously engaging in inner work highlights these intangible but powerful benefits, and results in internal resources that enhance quality of life.  Sue Sweeney, Chair, Gerontology Department, Madonna University