Advanced dementia care is vital to quality of life, Part 1

Until recently, very few people knew how to really take care of people with advanced dementia. New approaches were designed and quality of life and care are now viewed much differently than before through a long-term project with the Greater Southwest Chapter of the Alzheimer’s Association and Hospice of the Valley in Phoenix. The culmination of the project resulted in a manual and guidelines for caring for those with advanced dementia. For several years, I had the privilege to serve on this committee for the entire length of the project. I oversaw an Advanced Dementia Palliative Care Unit for four years, where I was able to apply many new techniques and observe lives change for the better. A positive outcome I noted was staff became more comfortable with this end-stage process and families became much more involved and enlightened as the end drew near.

The Advanced Dementia Palliative Care approach is one of comfort care. In fact, any good dementia care, whatever the stage may be, should have comfort care as the main focus for residents. During the process of offering comfort, one needs to review the psychological needs of the residents and their families; dignity, quality of life, respect for the person that remains inside, the environment, and the abilities that are still intact.

There is generally a lack of knowledge for this population and, as a result, many residents with advanced dementia are placed within the nursing facility’s main population where they are mixed with people of varying abilities and interests. Because late stage dementia can last for one to three years, it is paramount that their quality of life be considered in providing good care. We must learn to look at their quality of life instead of dwelling on their quality of death. At this end-stage, residents experience some common losses: speech is usually very limited or nonsensical, if the person speaks at all; self-orientation; bowel and bladder incontinence; and the resident usually needs maximum or total assistance for all daily cares.

Staff should be trained in working with residents with advanced dementia to anticipate and meet their comfort needs better. Learning to identify hunger and thirst, proper positioning, continence issues, agitation and pain will help healthcare workers to feel empowered and able to meet the ever-changing needs of their clients.

Meaningful interaction with the resident should continue and should focus on the five senses: smell, touch, taste, hearing, and vision. Calmly approach each person with a pleasant look on your face. A gentle touch on the hand or shoulder may be appropriate to get the resident’s attention and make him or her aware of your presence and to show loving care. It is important to continue talking to the resident and never at them or about them. One may think they don’t understand and perhaps they don’t, but we should always assume that on some level they are aware. Remember, residents with advanced dementia are still human beings who have lived, loved, and laughed. It is up to us to maintain their dignity and show them the respect they so rightly deserve. At this point, a family may be asked to fill out a short form that is called a “Life Story.” The Life Story is one page where families fill in the blanks, i.e., preferred name, marital status, children, grandchildren, employment history, favorite foods, pets, hobbies, and daily habits. Once the family fills it out, the Activity Department can type it onto a permanent page. Once completed, the page can be hung by the patient’s bed so staff can personalize care and interactions with the resident, along with family and others who come to visit. This promotes dignity and does not violate any HIPAA regulations.

Facility staff should also make the environment in each room warm and homelike, including the overall look of the nursing unit. Many times at this stage, families tend to take personal items home, but they should be discouraged from doing so. Family photos, favorite quilts, pillows, and other favorite personal items should remain and be used as a means to comfort and to communicate with their loved one. Again, these personal items provide comfort. Who wants to live in a room that is barren and forlorn? I am sure our own bedrooms in our homes are warm, personal, and a place of refuge.

Televisions should only be used if the resident truly watches it. Television can be horrifying to our residents when all they hear and see is about war, violence, serial killers, and more! A CD player would be very appropriate for the person to listen to his or her favorite music. Dayrooms should also be warm and homelike. Sometimes a change in seating or atmosphere is all that is needed, i.e., beanbag chairs, beanbag bed cushions, ambulation devices, and the use of music and aromatherapy.

Nursing plays a vital role in our residents’ quality of life when pain management is done correctly. Often residents are on antipsychotic medications for behaviors when, in fact, they are really in pain. We are treating people for behaviors instead of what is causing the behavior. We must first find the cause and then treat accordingly. The Advanced Dementia Guidelines recommend the World Health Organization (WHO) Pain Relief Ladder (https://www.who.int/cancer/palliative/painladder/en). The resident receives acetaminophen on a scheduled basis instead of an “as needed” basis. Many times this will provide the comfort they need. Our residents at this stage of the illness are unable to ask for pain medication, so it is up to the healthcare professionals to recognize the need and address it. Using the WHO Pain Relief Ladder, the medical staff will provide medication that works, even if it means taking it all the way to morphine. All staff should be trained to identify pain. Instead of treating the behavior, treating the pain will decrease the behaviors. Watch for changes in facial expressions, mood, body language, voice, loss of appetite, increased sleep patterns, and increased behaviors in general. Always check to make sure that basic needs have been met first and that someone isn’t just hungry or thirsty, tired, or has a need to be toileted or changed.

The Activity Department plays a very important role in the enhanced quality of life for those with advanced dementia. Without their interventions, most of the residents would lie in bed most of the time, with limited interactions from other staff, except during daily cares. Many might think it is impossible to do activities at this stage of the illness or fail to see the value, but it can be very rewarding, both for the activity professional and the resident. Activities help to provide meaningful engagement to enhance residents’ quality of life. In Part 2 next month, I will provide information and ideas on activities for advanced dementia care.

Diane Mockbee, BS, ADC, is certified by the National Certification Council of Activity Professionals and is President of the National Association of Activity Professionals (NAAP), with 1,400 members, as well as a member of the Arizona Association of Activity Professionals. She is employed by Palm Valley Rehabilitation and Care Center in Goodyear, Arizona, and is the Activity Consultant at Ridgecrest Healthcare Center in Phoenix.

For more information, phone (623) 536-9911, ext. 212. To send your comments to the author and editors, e-mail mockbee0408@iadvanceseniorcare.com.

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Editor’s Note: Every month members of the National Association of Activity Professionals (NAAP) will describe a program of particular interest and potential usefulness to readers.

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The National Association of Activity Professionals (NAAP) was founded in 1982, and is the only national organization that exclusively represents Activity Professionals working primarily in geriatric settings. NAAP provides opportunities for professional development and personal growth through national and regional conferences that offer a variety of topics and numerous hours of education. NAAP has established partnerships with allied organizations, governing bodies, consumer groups, regulatory agencies, and provider groups. They continuously work toward uniform Standards of Practice for all Activity Professionals working with elders. For more information, contact the NAAP Office at (865)429-0717, e-mail thenaap@aol.com, or visit https://www.thenaap.com.