Caring for residents with advanced dementia. (Not-For-Profit Report).

Fifteen years ago, Mrs. J was active in her church, loved to garden, and play with her grandchildren. Today, she lives in a nursing home, unable to walk, talk, or express herself to anyone--let alone to those she has spent her life loving. Alzheimer's disease has isolated her from life and continues warring with her from within. Now, she is considered to have advanced Alzheimer's disease.

"People with advanced dementia are the forgotten souls in the dementia-care continuum," states Gary Martin, PhD, CEO/clinical director of InteGer Behavioral Health Associates, PA. Acknowledging that nursing facilities provide excellent Alzheimer's and/or dementia care to those in the early and moderate stages of the disease process, Dr. Martin believes that progress must be made in identifying and fulfilling the needs of residents in the advanced stages of dementia.

Vicki McAllister, CNHA, CAS, administrator/COO of Glencroft Care Center in Glendale, Arizona, wholeheartedly agrees: "Traditionally, when a resident's condition changes from moderate to advanced dementia, he/she is transferred from a dedicated dementia unit into the general population because current thinking is that the resident can no longer benefit from specialized dementia programming. In reality, individual needs become greater because of lower functionality." Like general palliative care, advanced dementia care is "comfort" care, but it goes a step further by focusing on the emotional, social, spiritual, and psychological needs that preserve quality of life. Dr. Martin further defines this "palliative-care-plus" as a "deep holistic sense of awareness and respect for the individual." He explains that it focuses on the individual's quality of life, while aggressively identifying and treating pain and other discomforts.

Four years ago, Glencroft Care Center established the 43-bed Purple Sage Unit to break away from the prevailing "maintenance" mindset related to advanced dementia care. According to Dr. Martin, the drawback was that there were no models, no standards of care to draw upon, except their own expertise. With that in mind, Dr. Martin, in collaboration with the Alzheimer's Association (Desert Southwest Chapter--Central Arizona Region), set up a committee to develop a model of care, using the Purple Sage Unit as a project site.

Consistent and continual staff training is the bedrock of this project. "Training is done literally every week," says Dr. Martin. Not only is training ongoing for the unit staff, but it is part of the orientation for the entire staff on the Glencroft Retirement Community campus. McAllister adds that working with the Alzheimer's Association enabled the staff of Purple Sage to try new ways of care delivery: "We had the building blocks in place and were not starting from scratch." She goes on to explain that because of the interest, motivation, and desire for improvement, staff are receptive to new ideas and practices through this curriculum-based approach. Staff retention and satisfaction levels have greatly improved as a result.

"Since we've recognized that this is not an easier population to care for," says McAllister, "new protocols have been developed to address bathing, nutrition, activity, behavioral, and comfort issues." An all-encompassing approach is necessary because these residents rely on staff for all of their care. They cannot push a call button or communicate their needs. Everything done for the residents, from one-on-one activities through daily hygienic care, is focused on connecting with the resident.

McAllister cites bathing as an area of dramatic success. A shower can be an awful--even brutal--experience for someone with advanced dementia. The noise and rushing water increase anxiety and fear. "We reconsidered how showers were given and came up with two alternatives to soften the experience," says Dr. Martin. When this unit was renovated, the traditional old shower stalls were removed and new quick-fill tubs were installed. Music and aromatherapy were added to create a spa-like atmosphere. Another enhancement to the new bathing milieu was a towel-warmer, a large unit that provides heated towels, which calm and soothe the resident after exiting the tub. "Towel baths are another bathing option," says Dr. Martin. In a towel bath, the resident stays in bed and is covered with towels soaked in a warm no-rinse solution. Using those towels, the resident is massaged and cleaned at the same time. Small individual washcloths are used for the face and private areas. "Again," says McAllister, "background music enhan ces the comfort level." Combativeness and verbal disruption during bathing have been virtually eliminated. "I would have been pleased if we had bettered the experience by 50%, but to have 100% success is just eye-opening," says Dr. Martin.

As with bathing, dramatic outcomes have resulted from new nutritional-intake methods. "We've broken down meals into two smaller seatings in the dining room to provide more personal attention to the residents," says McAllister. Traditionally, weight loss has been accepted as part of the disease process, but through Purple Sage's redesigned nutritional program, this perception has been negated. Weight loss is not part of the disease, and can be managed through focused care. "Residents may not eat much at mealtime, but we've discovered that offering dementia-friendly foods throughout the day provides nutritional support and one-on-one connection with the resident," says McAllister. The rule of thumb for snacks is "soft and sweet." Pudding, yogurt, milkshakes, pureed fruit, and even ice cream are available to residents 24 hours a day. To help promote this, the unit is equipped with a blender so that staff can conveniently prepare fresh, tasty, and nutritious snacks for the residents. Dr. Martin notes, "By antici pating and quenching residents' hunger and thirst many times throughout the day [and night],we comfortably handle nutritional needs and significantly diminish problems associated with adequate intake." Not only are nutritional needs addressed through snacking, but the intervention becomes an activity that presents another opportunity to connect.

Most traditional activity programs are inappropriate and unrewarding for people with advanced dementia, says McAllister: "Activities in this special population should be done in small groups of not more than three or, for best results, be a one-on-one experience." In advanced dementia, the goal is to heighten resident awareness by sensory stimulation with a sensory room that provides audio and visual stimuli, including aromatherapy, music, lighting, and a mirrored aquascape.

Staff on the Purple Sage Unit connect with residents in many other ways. Singing simple songs or saying familiar prayers promotes connection. Dressing, continence care, or merelybrushinga resident's hair makes them feel safe, happy, and secure. "Massaging the hands and feet with lotion or oil is one of the best, most enjoyable, and physically beneficial activities we provide," says McAllister. Attesting to this, she notes that skin breakdowns, pressure sores, and pain virtually do not exist on the Purple Sage Unit.

Connections are also encouraged by the surroundings. "Everything around a resident with advanced dementiashould provide a soothing, comforting sensory experience," says McAllister. Each resident also has a framed biography in his or her room to remind staff and visitors of the resident's essence--his or her past, family, goals, and accomplishments.

Purple Sage is a dedicated advanced dementia care unit, but Dr. Martin suggests that advanced dementia care can be delivered by creating advanced dementia rooms or sections in any facility: "Although they don't use the call light or make demands, this population requires more--not less--care. They require special programs and caregivers with specialized skills." These programs are not costly, but they are effective.

A study was conducted for the Alzheimer's Association on the improvement of Quality Indicators in the Purple Sage Unit, In a 10- to 12-month period, significant improvement was shown in the areas of depression, delirium/disordered thinking, and behavior. The Alzheimer's Association credits the success of Purple Sage to effective training of a caring, willing staff. On Purple Sage, forgotten souls are cared for, loved, and celebrated.

For further information, contact Vicki McAllister, CNHA, CAS, administrator/COO of Glencroft Care Center in Glendale, Arizona, at [phone], or visit www.glencroft.com. Or contact Gary Martin, PhD, CEO/clinical director, InteGer BehavioraL Associates, PA, Scottsdale, Arizona, at [phone]. To comment on this article, please send e-mail to [e-mail].