Logo of "the vicarage by the sea" celebrating its 25th anniversary, featuring an illustration of two people standing at an open door looking out to the sea, symbolizing support for individuals living with dementia.

Advocating for the Whole Person Living with Dementia

A key tenant of The Vicarage philosophy is advocating for the whole person living with dementia. Advocating for a loved one living with dementia requires an understanding of the needs of the individual living with this dementing illness.

By “whole person”, we aren’t just focusing on the disease and the diagnosis. We are also focusing on the social, psychological, emotional, and physical needs of the person living with dementia. We work with families to learn intimate details about their loved one, because they know them best. They provide vital first-hand knowledge of their loved one’s life history, the current challenges their loved one may be facing and the needs relevant to quality of life.

A person-centered approach to dementia care, a term coined by the late Thomas Kitwood, social psychologist and founder of the Bradford Dementia Group, places the humanity of the person before the disease. At The Vicarage, we strive to know the person we are caring for, through family history and interpersonal engagement. We also integrate the medical diagnosis. The person comes first and the disease second.

When supporting a loved one living with dementia, often the disease is all encompassing. The medical system focuses on the illness, denying the personhood of the individual. Regularly, we hear stories of families challenged to navigate the medical system with their loved one living with dementia. Families are navigating a system that poses challenges for patients with dementia. Settings are frightening to the patient. The noises and fast pace can increase anxiety. Staffing is limited. The entire culture of the medical setting works against stabilizing those living with dementia.

Recently, I met with a family member who was looking for long-term dementia care alternatives for her mother. She spoke of the challenges they all faced each time her mother entered the hospital for pneumonia. Her comments to me focused on how poorly her mother did in the setting; how much cognitive ground she lost each time she received hospital care. She even talked about how strongly she advocated to medical staff to allow her mother to stay home with an IV antibiotic available. She was, however, unable to convince the medical personnel that it was not in her mother’s best interest to be in the hospital.

When supporting a loved on living with dementia, stigmatization is felt by the advocate and their loved one. Therefore, primary and secondary stigma are real challenges for those trying to navigate healthcare. In the example above, the daughter wanted her mother to receive care without unnecessary stress. She faced challenges in the interaction. In the end, she succumbed to having her mother admitted to the hospital for care, and exposed her mother to potential cognitive deterioration due to stress.

The approach exercised through The Vicarage model to challenge the stigmatization among those living with dementia is referred to as the “normalization” of dementia. Essentially, we turn the challenging aspects of dementia on their head.

For example, “wandering”, a term that typically refers to movement without purpose among those with dementia, is redefined as normal. Instead of seeing it as a challenge and problem (which in institutional settings requires locked doors and often pharmacology, which is treating behaviors that are intensified as a result of locked doors), it is viewed necessary and productive.

At The Vicarage, staff “wander” with the residents. Exercise is gained by all parties, and time is devoted to meeting the need of the individual (acknowledging and validating the desire to go), getting fresh air, conversation, experiencing the natural world, and, finally, the release of anxiety. This is just one example of redefining challenging behaviors into productive, normalized aspects of daily life for individuals living with dementia.

Another example of the normalization of dementia relates to what we call “living in their reality”. Essential to advocating for your loved one living with dementia, is validating their reality. Validation therapy has been around since the 1970s. Naomie Feil used validation therapy among groups of cognitively challenged populations.

The concept recognizes the need of the other, honors it and acts to work to meet that need. As an advocate for a loved one living with dementia, living in their reality is a profound manner of validation therapy. Rather than correcting the person in their understanding of reality, we move to where they are.

If, for example, a loved one is searching for members of their family, some of whom may be deceased, a compassionate response is not to correct their reality to meet yours. Instead, ask them about the family member, reminisce with them, and then confirm with them that if you see the person, you will certainly notify them – this is a form of validation.

Normalization of unique aspects of dementing behaviors challenges the culture around the individuals living with dementia. What develops is what I refer to as a “culture of dementia”. The culture focuses on the people and how to support them as they live with their illness, as opposed to trying to control and conform them to our understanding of reality.

An advocate cannot prevail in their duties if they are not caring well for themselves. Please know that if you are caring for a loved on living with dementia, you are not alone. The numbers of those living with dementing illnesses continues to rise globally. Therefore, advocates and caregivers must seek out support systems for themselves.

There are groups to discuss the challenges of care giving, specific to dementia. There are also professionals to support your mental health. Therapists and specialists in the field can validate your realities, which is just as important as validating the realities of those for whom you are caring.

Proper support in home is essential, and often requires outside services to aid care. Fortunately, there are many more home services available now than there were twenty years ago. Finding dementia educated care providers can be challenging, but remember to keep the personhood of your loved one first and foremost in the conversation and care plan.

My profession encompases the psychological care of the families that come to The Vicarage, as well as folks in the community caring for their loved ones. I spend significant time with family members coming to grips with their loved one’s condition and how to redefine their relationships with their loved ones. Both families and their loved one’s living with dementia need hope, validation, and recognition for the very challenging work they are doing.