Bessie’s Hope was founded almost 25 years ago to bring people of all ages into nursing homes, assisted living and memory care to build intergenerational relationships that enrich the lives of the elders, the volunteers and the community as a whole. Sixty percent of the nation’s nursing home elders receive no visitors. Thus enters the Bessie’s Hope volunteers who give a loving touch, a listening ear and a caring presence.
The discomfort toward to creating relationships with elders in long term care that is common among many individuals in our society is based in fear. Unfortunately, growing old is feared in our society, so avoiding spending time in elder care is a coping mechanism to limit our exposure to our own mortality and our own eventual frailty. There is also the fear of emotional risk when we open our hearts to cultivate relationships with elders in long term care.
One of the biggest fears that people have about aging is the possibility of a loved one or themselves developing Alzheimer’s disease or other forms of dementia. Dementia is a term that describes a group of symptoms associated with a decline in memory or other thinking skills severe enough to reduce a person’s ability to perform everyday activities. The most common cause of dementia is Alzheimer’s disease, accounting for 60 to 80 percent of cases of progressive dementia. Vascular dementia is the second most common dementia type, and there are many other conditions that can cause symptoms of dementia, including some that are reversible, such as thyroid problems and vitamin deficiencies.
Dementia is often incorrectly referred to as “senility” (from the latin word meaning “old man”), which reflects the formerly widespread, but incorrect, belief that serious mental decline is a normal part of aging. It is estimated that only 1 in 6 women, and 1 in 10 men, who live past the age of 55 will develop dementia in their lifetime. Many issues can cause decline in memory or thinking skills that impact people of all ages.
Our own familial elders and the elders in long term care are treasures, including those with Alzheimer’s Disease. Even as their lifetime of acquired wisdom may be lost, their ability to love and to be loved only grows.
“The greatest thing you’ll ever learn is just to love and be loved in return.”
-“Nature Boy” by eden ahbez
The vast research accumulated to explain cognitive and functional retrogenesis helps us understand the process of Alzheimer’s Disease as a reversal in the order of acquisition in normal human development. The final stage in the disease progression mirrors the developmental level of “birth to age 2”. Research also proves how valuable the relationships between small children and elders who have Alzheimer’s Disease. (pic with Ruby and Bryan) Just as the children, our elders with Alzheimer’s need our love, our patience, our praise and our recognition of their being very special human beings. Bessie’s Hope works hard to instill within youth and adult volunteers that these elders, like all elders, need and deserve to be treated with dignity and respect.
The reason Bessie’s Hope has such successful intergenerational programs is the education, training and activity development, which ease the fear and “stage fright” for volunteers of all ages and give them the skills for cultivating mutually rewarding relationships. Interacting comfortably with individuals who have dementia requires different approaches than what many volunteers are used to.
“Those with dementia are still people and they still have stories and they still have character and they are all individuals and they are all unique. And they just need to be interacted with on a human level.”
– Carey Mulligan
At Bessie’s Hope, we have developed several tips and guidelines for those entering into intergenerational relationships for the first time. Here are a few tips from our training materials:
- If someone is argumentative, insulting, angry, or cursing
- Give them the patience and unconditional love they deserve. Whenever you are dealing with a person with dementia, remember the person, not the disease. When dealing with a challenging behavior, remember it is the disease, not the person.
- Do not judge the person. We have no way of knowing the pain (physical and emotional), confusion, fear, or sadness they are feeling. Remember, part of dementia is a loss of the ability to communicate effectively.
- Do not take insults or threats personally. In the reality of a person with dementia, you might represent a completely different person or time. Remember they are not trying to give you a hard time; they are having a hard time.
- If someone talks to you as though you are someone else that they may be remembering in a different time or place
- This memory is very real. Even though your understanding of reality is different from theirs, theirs is equally “real.”
- If it seems to be a pleasant or comforting memory, just be in their reality with them. If you are lucky enough to share this space and the people in it with your grandpartner, consider yourself blessed. It is the closest you will ever get to traveling to another time.
- Do not attempt to reason or to dispute the reality that person is in. Your goal is not to bring them into your reality, but to make join in their reality.
- One of the easiest ways to rob a person of their dignity is to be dismissive. Remember, this also applies to individuals who have dementia. Never talk through, over or about them as though they aren’t there. Include, involve, and respond as though you understand, even when you don’t.
- If you are asked questions like “When is my wife coming?” or “Is it time to go home?”
- Be validating and not dismissive or corrective. Once again, you need to exist in their reality. Even if the person they are looking for passed away, that is not where their head and heart are right now.
- Gentle deflection may be necessary. “I’m not sure.” “I’ll check on that for you.”
- Respectfully change or redirect the conversation. “I’m not sure when she will be here. Do you remember the last time you saw her? Tell me about how you met.”
- If someone in advanced stages of dementia makes no attempt at communication
- Loss of communication is part of dementia, but that isn’t the same as loss of consciousness. They may be sitting with eyes closed or blank stares, but in their minds they could be small children or even babies.
- Even those who can’t speak can often hear. Talk to them, sing to them, share with them.
- Don’t forget about the power of touch. [We will have a future blog post on this topic alone.] A gentle touch, a caress of their hair, rubbing their arms or shoulders, holding their hand – all these offer a feeling of security.
- Music can be enjoyable to them. You may see a nonverbal resident moving a hand or foot or their head to the music. And contrary to myth, the music does not have to be slow. Ideally, the music is familiar and meaningful for the elder.
I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.
We have been talking about our elders with dementia and how you can support them. But if you have been following our series for Intergenerational Month, you know that whatever we give the elders, we get much more in return. Next week we will be continuing our series by discussing the benefits intergenerational relationships have on our youth volunteers. If you would like to learn more about our programs and how you can get involved in an intergenerational friendship yourself, check out our website.