Person-Centered Care

Person-centered care is respectful of an individual's values and fundamental beliefs. These are the principles that guide a person's life through attitudes and actions. These help a person determine right from wrong and are influenced by many sources including one's culture, religion, group affiliations, and the family.
Every person is unique and though it may be difficult to uncover the inner thoughts and feelings, these are vital to know, or at least to be aware of, for assisting in making important decisions. And I really should not say "assisting" but rather supporting a loved one's decisions. We each have our own ways of completing tasks, following routines, and celebrating traditions. Each aspect of these is part of our identity and deserves respect, even if understanding some of these is elusive. All of our quirks and individualism help explain why we act or react in certain ways and why we respond to certain people and situations as we do.
As caregivers support a loved one, they sometimes have to learn more about individual preferences and in some cases, they must "unlearn" preconceived notions about what we have decided that another person knows or thinks or understands. By doing this respect for personhood and person-centered care develops.

Personhood versus Institutional Care

In the past most care plans for people as they age came from the medical field or institution with little input from the individual concerned. While the individual may have been consulted about surgery, medications, and living situations, the ultimate decisions were left to those "in charge" of care. So maybe Grandma had chemotherapy at 95 when she really would have preferred some peace. Perhaps Great Uncle John had a hip replacement when he was completely content to use his walker and wheelchair as the thought of surgery and recovery filled him with fear.
The choices made by others are most often well-meaning, but do they truly reflect well-being? Some doctors recommend and perform surgery not based so much on what is best for the patient but rather what makes sense to them as a surgeon. After all, surgery is what they do. I am not dissing on doctors, but rather stating a reality that I have recently confronted. Doctors do what they do: prescribe and perform surgery.
And it is not just doctors. Long-term care facilities do what they do: care for clients in an institutionalized setting. While customized care is always the best in suitability, care facilities often are under-staffed and over-stressed and thus fail to meet all of an individual's needs. Instead of allowing Grandpa to sleep until 10am after a long night of wandering, it is simply easier and often safer to send him the bed at 8pm so he can be dragged from sleep at 6am when showers preface breakfast.
But what if we changed our thinking and adjusted care? What if we made a paradigm shift from "one-size-fits-all" to streamlined, person-centered care? Are we up to the challenge? I believe that we are.

Treating People Like VIPs

We all liked to feel valued - important - knowledgeable - a part of something - a voice with family and friends. This value carries over to those with Alzheimer's disease or other dementias. I know it is easy to chat over and around someone who does not appear to understand or to be actively involved in the conversation, but I also recognize that this is absolutely wrong. Inclusion is vital to good physical and mental health.
A recommendation from the Bravo Zulu presentation I attended is treating others like VIPs:
V - valuing their personhood, our relationship and their extended relationships, and their cultural identity;
I - treating people as unique individuals;
P - looking at the world from the perspective of that person;
S - providing a positive and supportive social environment. (Brooker, 2007)
In reality, shouldn't these simple steps be the way that we interact with everyone. From infancy through adulthood, it is nice to have a sense of belonging.

Relationship-Centered Dementia Care

I am currently a participant in a course offered by Jennifer Carson, PhD, who is with the Sanford Center for Aging at UNR. Called "Bravo Zulu" as it was first intended for members of the military and their families, the topic and information are applicable to everyone serving as care giver or care recipient.
A first step in relationship-centered care is knowing and understanding the loved one with dementia and above all, making him/her an active member of the caregiving planning team. Few people like decisions foisted upon them without a shred of input, and that is true of those with dementia. Understanding of culture and cultural background is key to helping understand how needs can best be met and by offering solutions that match the values and wants of each individual.
Military families as a focus helps attendees better understand culture as the military entails strict rules and protocols especially focused on being tough and never asking for help. Breaking down, or at least chipping some holes in the "no-need-for-assistance" barrier, means that a loved one in need can receive care and advice that benefit good health and healthy living.
It is important in the military culture - just as in every culture - to begin by accepting that military is a general term and that Army, Air Force, Navy, Coast Guard, and Marines are specific. Each branch has a unique creed and mission. Not all military are infantrymen or sailors, just as every person is an individual. Relationship-centered care requires that caregivers fashion care around the concerns and desires of an individualized life history made up of experiences, events, and relationships.

The Holidays Approach

With some big holidays arriving soon it is important to be prepared to make each event wonderful, safe, and satisfying for everyone, especially a loved one with Alzheimer's disease or other dementia. Even though an individual may appear lost, befuddled, and anxious, s/he still can benefit greatly from  the love and camaraderie of family and friends. A few hints include:
1. Plan events for the late morning or early afternoon. This allows plenty of wake-up time plus lots of light to avoid confusion.
2. Determine a quiet spot in your home so that your loved one can be surrounded by those who care, but just a few at a time. Even noisy little ones add joy - but in small doses with rambunctiousness at a minimum.
3. Create a menu of your loved one's favorite dishes, taking under consideration items that come in small bites. A few specialties are perfect - too  many may add to angst as decision-making may be tough.
4. Decide where a nap can occur, if necessary. This should be in a quiet area with adequate lighting to avoid potential mix-up in where your loved one is should s/he suddenly awaken. Move a chair, pillows, or soft objects next to the bed or couch in case your loved one should decide to roll. Be sure to check periodically that a peaceful rest is unfolding.
5. Select photo albums or create a slide show to share past events and memories with all of the family, especially designed with your loved one with dementia in mind.
6. Encourage all attendees to be kind and gentle, to assist but not to overwhelm, to help but not demean. Some folks will not be able to deal with this cognitive decline. Help them understand that the same person resides within but it is hard for him/her to engage as in the past.
Love makes a difference!

Care and Trust...continued

Often, those with dementia become wanderers. A familiar stroll around the neighborhood can turn into a misadventure as steps become jumbled and surroundings become strange. This is even worse, of course, when it comes to driving. Those with dementia still want to be independent and driving is of supreme importance. After all, when a license is removed, the opportunity for freedom and social interaction diminishes creating isolation, dependence, and depression.  A good conversation includes these concerns and also potential remedies such as a walking partner or driving services. I also recommend that families contact law enforcement about concerns so that officers can learn walking routines of one who may become lost. A GPS device for shoes and/or an identification bracelet with an emergency number engraved on one side and the health concern on the other are vital.

            I recommend that beginning at age 50, people hold a yearly summit about worries, finances, health issues, purchases, and other transactions. By maintaining an open conversation, when problems do arise, much is already out in the open. No, you do not need to divulge deep secrets, precise monetary subjects, or other private material, but honest talk now alleviates some stress of burdensome conversations later. Perhaps spouses, children, and other significant relations may not agree, but at least they are fully aware of wishes and requests. In later family gatherings, if dementia has appeared, realize that your loved one may not be able to assess multi-step processes and questions. A little at a time, a few subjects on the table, will provide the most positive results. “To be continued” is recommended.

            This should probably have come at the beginning, however, I wanted to emphasize the worthiness of building trust and personal reliability. Hopefully your loved has recognized some cognitive decline – forgetting dates, losing valuables, feeling perplexed about decisions – and has already suggested a complete medical examination by a neurologist or gerontologist. Self-analysis is undoubtedly the best way to pursue the most beneficial health diagnoses. But sometimes, denial is far easier and so you, as the caring and devoted family member, may be the one to broach this somewhat uncomfortable conversation. Knowing that an abrupt refusal may greet you, plunge on accepting that your concern is of utmost significance.

Care and Trust

With holidays approaching and family and friends visiting, it is essential to maintain calm and safety for loved ones with Alzheimer’s disease. There is nothing like a ruckus to set off a fuse; being prepared can circumvent that. The more I have thought about appropriate behavior and reactions toward those with dementia, the more I understand that this is the way we should treat everyone – with dignity and respect.

Always approach a loved one from the front so that eye contact is made and safety is assured.  Speak calmly and evenly with no excess inflection or tones that sound accusatory or gruff. A soft, gentle voice is relaxing and is likely to encourage conversation. Although this conversation may be one way, primarily you speaking, you may find that your loved one engages. While this back and forth conversation may be confusing with responses off topic and strange, the sound resonating from this interaction is precious.

If somewhere during the visit your loved one becomes agitated, frustrated, or angry, again remain calm, nodding in agreement even when you are completely baffled with what is transpiring. Kindness goes a long way in helping comfort someone with dementia. Arguments and raised voices only exacerbate the situation transforming a slightly out-of-kilter moment into a disaster which is difficult or impossible to remedy. You will never “win” an argument with someone with Alzheimer’s disease so relent, throw in the towel, and return to being that serene, supportive friend. You may need to remind other family members to avoid confrontation as well. There may be pressing issue about long-term care and future health choices that need to be discussed, but yelling about these solve nothing.

When the family gathering includes the above-mentioned conversations, be sure to include your loved one. Even in the deepest throes of dementia, the individual still possesses minutes, seconds, even milli-seconds of lucidity. No one likes being talked about or being talked over, so deliver this same dignity to someone with cognitive decline. Those with dementia can be amazing as well as wily, explaining or responding to one idea with clarity and to the next with utter bafflement. Grab the lucid moments and hang on to the treasure that they are.