Few things are more frightening to a person than a diagnosis of Alzheimer’s or a related dementia. It’s also frightening to the loved ones of the person diagnosed and, in particular, the person that will be the primary caregiver.
Memory impairment has a way of turning life upside down. It’s the main reason I co-authored the book, “I Care – A Handbook for Care Partners of People with Dementia.” The book is not just for family members who accept the daunting task of caring for a loved one, but for the professional caregiver, who spends a significant portion of the workday navigating challenges.
The question for family members and professionals is the same. How can I help the person diagnosed to achieve the maximum level of independence and self-sufficiency, and enjoy the highest life quality possible? Often lost in the process is the impact on the caregiver, which is why we prefer to use the term “care partner.”
A “caregiver” is just that: It’s someone that provides the necessities for the memory-impaired person. A “care partner” is someone who creates an environment in which the person contributes to his or her own care to the degree possible. “Impossible” is the typical response we hear when such a methodology is suggested either to the family care partner or the professional. This is because the conventional method of care approaches the situation in much the same way as caring for an infant. This does not mean the caregiver is lacking in love or compassion, but misinterprets what is needed.
An infant is incapable of caring for self because of a lack of experience and a lack of motor skills. A person with dementia, typically, is not lacking either. The goal should not be to satisfy every need. Instead, an environment should encourage independence and allows the person to meet his or her own needs. This, however, requires the caregiver to adopt a new mindset and develop a new approach.
The new approach is being used in many out-of-home communities caring for the memory impaired. The results from our workshops in teaching this new approach is encouraging. Participants have been enthusiastic, participative, and eager to try the strategies. Follow-up to our training continues to reveal considerable success in the way dementia residents have been responding. Behavioral issues have been reduced, families are delighted, and professional care partners are more motivated and fulfilled in their work.
One finding emerges from all our workshops. Specifically, professional care partners have the desire to see residents flourish using best care practices but lack the education. Once they begin to employ the new techniques, they are shocked to see how residents respond and how bad behaviors diminish. They also notice a drop in their own stress level, allowing them to provide even better care.
Our model is not complicated. Here are some of the highlights:
1. Recognize a person with dementia has his or her own “reality.” Avoid trying to drag the resident into your reality – join them in their world.
2. Don’t correct unimportant information expressed by the resident even when you know it is inaccurate. Referring to their grandchild with the wrong name is not critical to the well-being of the resident. Instead, engage the resident in way that might help them remember accurately.
3. The resident will have difficulty retrieving accurate information. Remember the essence of the person is very much in tact.
4. Do not use care techniques that you would not like used on you. The resident has cognitive issues; they have not lost their mind. For instance, don’t force a resident to bathe. They will likely be uncomfortable undressing in front of you, but will not be able to express it. As a result, the resident may become physically aggressive for lack of any other manner in which to respond to an uncomfortable situation.
5. Use your creativity in creating an environment that is conducive to the resident desiring to bathe rather than forcing the outcome.
6. There’s a reason that the ratio of care partners to residents is higher in a dementia community. Memory impaired residents function best with care partners, who are patient, creative, resourceful, and, above all, appropriately trained in the finer points of caring for this very special population group.
Management teams in dementia environments are beginning to realize that efficient care should not be the objective in their communities. Once this becomes evident, management quickly sees the value of relational care. I am not oblivious to the demands of the bottom line. Having served as executive director for several dementia communities, I know the financial constraints.
But I learned early on that ROI is tied to occupancy and that census requirements are better met with better care practices. The reason is simple: Families will not settle for conventional elder care practices for their loved one with dementia. These families want to see their loved ones having fun, enjoying some degree of fulfillment, experiencing a peaceful and calm lifestyle, and being able to thrive in a dignified and respectful residence. The communities that offer this level of care for their memory-impaired residents usually have full occupancy and a long waiting list.
When I managed a dementia community on the upper West Side of Manhattan several years ago, I was able to establish full occupancy within eight months of taking over and routinely maintained a waiting list of 17. I was able to accomplish this by using the very techniques I now teach to professional care partners. It’s not impossible for a growing list of healthcare organizations that have the courage and rationale to change the way they deliver care to this unique segment of our society.
Kerry Mills, MPA, is an expert in best care practices for individuals with dementia, both in the home and in out-of-home health care residences and organizations. Her book, I Care, coauthored with Jennifer A. Brush, is the 2014 Gold Award Winner of the National Mature Media Award.