The musicians on the Symphony of Soul roster frequently ask me how they should interact with Alzheimer's and Dementia patients. As you are aware, we provide live music to people of all ages, from infants to senior citizens, who are dealing with issues such as cancer, homelessness, mental illness, drug and alcohol addiction, and more. We work with really vulnerable people, therefore it's critical that we treat them with kindness and respect. For someone who isn't familiar with this community, relating to someone with memory impairment might be very difficult.
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“Dementia is a decrease of mental function that can occur as a result of various illnesses. Alzheimer's disease (AD) is a type of dementia that progresses over time. It has an impact on memory, cognition, and behavior. Memory loss, as well as issues with language, decision-making skills, judgment, and personality, are all required characteristics for the diagnosis.” www.ncbi.nlm.nih.gov
Fortunately or unfortunately, I have a lot of personal experience with this demographic, because to my 11 years of running Symphony of Soul and my 7-year walk with my loving mother, who is now in advanced stages of Alzheimer's.
I am not a medical professional by any means, but I will share with you some vital things I've learnt along the path from my heart to yours.
A person with memory loss is similar to a child.
They gradually decline from high functioning adult to teenager, grade schooler, toddler, and infant, bereft of all abilities, talents, and high brain functioning – but never in any specific order.
If you like children, you'll like Alzheimer's and Dementia patients as much as I do.
Like a child, they may be both brilliantly mischievous and funny, as well as incredibly gentle and affectionate.
For them, every day and every moment are fresh new, just as they are for a youngster.
Yes, they experience temper tantrums, anxiety, and tears over seemingly insignificant things, just like small toddlers.
Due to a restricted language, they have difficulty expressing themselves in words, are afraid of things they don't understand, and pick up things that look attractive to them – even your pocketbook!
As the condition worsens, individuals may dress in strange combinations, spill food all over themselves when eating, and become irritable when they need a nap, exactly like tiny children.
They, like most kids, are famished for attention.
We must be willing to enter their world, no matter where they are at the time.
Some of the women at one of the care centers enjoy walking around with baby dolls.
On some days, the baby dolls are just toys to them, but on others, they are genuine babies.
It would be terrible and insensitive of us to ridicule, condemn, and say things like this “That isn't a genuine child!
“You're a doll!” exclaims the narrator.
Saying “I love you” is a loving choice “Oh, what a lovely baby!
What's her name, by the way?
“May I take her in my arms?”
This respects the dignity of the Alzheimer's patient.
As a general rule, avoid shaming or criticizing them.
They experience the world through the eyes of a kid, and it is our responsibility to treat them with the same care and patience as a child.
However, there is one caveat: they are not children.
They are adults who have had long, full, and productive lives, and it is crucial to recognize and appreciate their dignity.
As a result, we must never belittle them or speak about them in front of them as if they aren't present.
I also can't emphasize enough how important it is that we never, ever try to push them to face the reality of their illness!
Self-protective denial is common in people with this disease, especially in the early stages and for good reason!
It's terrible to wake up not knowing who you are, where you are, or why you're here because your mind has gone blank.
People have moments of functioning well and moments of feeling absolutely blank of all understanding in the early stages of the illness.
This, in my opinion, is the most difficult aspect of the condition for them since they are aware that something is wrong with them but are too afraid to face the horrible reality.
Alzheimer's disease and dementia have no known cures.
The patient's condition worsens until the brain and all bodily functions shut down completely, and the patient dies.
Forcing someone to face that horrifying reality is cruel and senseless, not just because of the sickness's awful reality, but also because the disease saps one's mental and emotional capacity to cope with it.
It'd be like forcing a tiny child to confront the fact that she had cancer.
The poor youngster would be terrified and scared, but she would have limited understanding of what was happening to her.
As the disease proceeds, our Alzheimer's and Dementia-affected loved ones lose all awareness and are unaware that anything is wrong with them.
They will therefore be able to live more fully in the present moment and will feel increasingly at ease.
This is a genuine blessing.
Early on, you'll have a lot of repeat chats, which can test your patience.
Remember such chats, because you won't be able to talk to them about much in the later stages of the condition.
They may experience times of disorientation throughout the disease, wishing to “go home,” “speak to daddy” (who has been dead for over 30 years), or be concerned about the fact that they are dying “I don't have any cash on hand!
“Who took my money?” I wondered.
These situations can be aggravating, but rather than losing patience, the best method is to first reassure them with easy answers such as “You can talk to your daddy later today, okay?” or “You don't have to worry about money anymore.”
“I'll look after you.”
Our loved ones with Alzheimer's and Dementia serve as our greatest spiritual instructors.
How many religious and spiritual beliefs advise us to be present in the moment?
We are advised to let go of the past and stop worrying about the future, because all we have is now.
Friends in 12-step programs encourage us to live “one day at a time,” which for someone in the grips of addiction could be “one minute at a time” or “one second at a time.” “One second at a time,” says the narrator.
Children and persons with Alzheimer's and Dementia are the best examples of living in the present moment.
Psalm 46:10, which our Jewish and Christian friends remind us of, states, “Be still, and know that I am God,” declares the Lord. Our Buddhist friends recommend meditation to assist exercise inner calm and discover the benefits of “being” rather than “doing” in the present moment. I can tell you that even after 25 years of meditation practice, I still find it difficult to just sit and meditate “Be” We “healthy” individuals are wired to get out and “do”! No matter what type of meditation I've tried, it's always been difficult! For the past eight years, as a Christian, I've felt most at ease doing Contemplative Prayer, a type of meditation. Nonetheless, I am faced with the same task of sitting in stillness and concentrating “Being.”
Our worldly perspective is to succeed, succeed, succeed!
We'd like more “Success” is frequently defined as “having more stuff, having more status, having more money, having more fancy automobiles, having more designer clothes, having more, more, more!”
However, numerous religious and spiritual teachings warn us that none of this gives true and permanent satisfaction, and we don't carry any of it with us when we die.
We've been told that the things we concentrate on the most are the things we actually worship.
What is the root cause of dementia?
Degeneration of the cerebral cortex, the region of the brain responsible for ideas, memories, behaviors, and personality, is the most common cause of dementia. Dementia is caused by the death of brain cells in this region, which results in cognitive deficits.
Dementia can be treated in some cases. Head injury, brain tumors, infections (such as meningitis, HIV/AIDS, or syphilis), simple and normal pressure hydrocephalus (when the fluid in which the brain floats collects outside or in the cavities of the brain, compressing it from the outside), hormone disorders (i.e. disorders of hormone-secreting and hormone-regulating organs such as the thyroid gland), metabolic disorders (i.e. diseases of the liver, pancreas, and kidneys), and simple and
Unfortunately, the majority of dementia-related illnesses are progressive (causing a gradual reduction in functioning), degenerative (i.e. increasing worse over time), and irreversible. Alzheimer's disease (a progressive loss of nerve cells with no known cause) and vascular dementia are the two most common degenerative causes of dementia (i.e. loss of brain function due to a series of small strokes).
Alzheimer's disease (AD)
Alzheimer's disease (AD) is the most frequent irreversible cause of dementia, accounting for 50% to 70% of all cases2. AD is caused by abnormal protein deposits in the brain that damage cells in memory and mental function-controlling parts of the brain. The accumulation of beta amyloids is the key underlying disease process driving the advancement of Alzheimer's disease, according to a major scientific hypothesis.
Proteins called beta amyloids form plaque-like deposits in the brain. As a result of an imbalance between peptide production and clearance, they build up slowly and steadily. Clinical symptoms of Alzheimer's disease arise only after neuronal loss has progressed to a certain point. Because beta amyloid builds up over time, it can take anywhere from 10 to 20 years for a patient to display any visible signs of the disease. 3.
Currently, there is no way to prevent Alzheimer's disease. There are, however, two identified risk factors for the condition.
- AD4 affects roughly 5% of those over the age of 65, 20% of those over the age of 80, and 30% of those over the age of 90.
- Family history: Currently, just one gene is known to influence AD development, but new genes that increase the chance of developing AD are continually being discovered. In the coming years, more susceptibility genes are anticipated to be discovered. People who have a parent or sibling with Alzheimer's disease are two to three times more likely to develop the condition than those who do not have a family history of the disease. The risk increases considerably more if more than one close family has been affected by the disease5.
Vascular dementia
The second most frequent cause of dementia is vascular dementia, which accounts for roughly 20% of cases6. Atherosclerosis, which is caused by deposits of lipids, dead cells, and other debris that accumulate on the interior of arteries and partially (or fully) impede blood flow, is the cause of this dementia. Multiple strokes, or stoppage of blood flow to the brain, may result from these blockages. This type of dementia is known as multi-infarct dementia since the blockage of blood flow is also known as “infarction.” High blood pressure, high cholesterol, heart disease, diabetes, and other diseases are all linked to vascular dementia7. Although treating these disorders can reduce the progression of vascular dementia, once functions have been lost, they cannot be regained.
Mixed Dementia is a disorder that occurs when vascular dementia and Alzheimer's disease coexist.
8.
Other
Parkinson's disease, Huntington's disease, Pick's disease, and Creutzfeldt-Jakob disease are examples of irreversible medical disorders that can induce dementia (at a considerably lower rate).
- https://publications.theseus.fi/bitstream/handle/10024/15007/thesis%20viviana%20piipponen%20pdf?sequence=1 Page 15 of
- King Baudouin Foundation, Belgian EU Presidency 2010, p. 6; Preparatory Report of the High-Level Conference on Dementia, King Baudouin Foundation, Belgian EU Presidency 2010, p. 6; Preparatory Report of the High-Level Conference on Dementia, King Baudouin
Resolution on a European Initiative on Alzheimer's Disease and Other Dementias, European Parliament, January 2011.
Where is your soul when you have dementia?
Rev. James Ellor, a chaplain at a Chicago nursing home, decided to conduct an experiment. He acquired a turn-of-the-century Sunday school book, selected the most popular hymns and Bible verses from that era, and created a worship service for dementia patients who had been barred from the chapel due to incontinence when new flooring was installed.
Ellor's discovery has given Alzheimer's care a whole new dimension: soul care.
Dementia patients could not recognize their children, but many could recall the opening verse of favorite songs from their childhoods, and many could repeat Bible texts they had studied as youngsters, such as John 3:16 or the Twenty-third Psalm.
Furthermore, when given the opportunity to engage in a modified worship service, individuals would happily clap their hands and hum hymns and recite Bible verses for several hours after the service had ended.
“Persons with dementia frequently express more joyous noises of singing than people without dementia,” said Ellor, who is now a professor at Baylor University in Waco, Texas, and co-director of the PhD program in social work there.
Over the last two decades, an increasing number of Alzheimer's care facilities have started to offer worship services, and the response from patients appears to counter doubters' claims that dementia proves the soul doesn't exist.
That school of thought, championed by the late philosopher Paul Edwards among others, believes that what believers experience as the soul or spirit is nothing more than electrical impulses in the brain that decay, along with memory, when the brain is ill.
Others, on the other hand, point to a phenomena known as “terminal lucidity,” in which a person who has been mentally handicapped appears to regain brain function for up to two hours before death and is able to coherently talk with family members. As dementia proceeds, such experiences appear to show that a person's spiritual nature is buried, not destroyed.
“We can't link one's degree of intellect with the presence or absence of the soul,” Bryan Auday, a psychologist who specializes in brain studies and teaches at Gordon College in Wenham, Massachusetts, said.
“The soul is more than cognition,” he explained. This implies that people who were spiritual before dementia still have spiritual needs, even if they can't “practice, feel, and connect with God the way they used to,” he added. “Their faith hasn't vanished.”
Dr. John Geyman is a physician whose wife, Gene, was a teacher, poet, and puppeteer who died in 2012 at the age of 77 from Alzheimer's disease. He released “Souls on a Walk,” a book on the couple's 56-year marriage and the disease's 16-year course, two years after her death.
“Her soul was with her all her life, even when she couldn't do things or remember things,” says Geyman, a Unitarian who lives near Seattle and does not belong to the Episcopal faith his wife followed.
According to Ellor, who is a professional social worker as well as an ordained Presbyterian minister, this is what most family members and caretakers would say.
“I've never met someone who cares about a person (with Alzheimer's) who would argue that the soul has left before death in 40 years,” he remarked.
As neurons die and the brain shrinks, Alzheimer's disease, which affects an estimated 5.4 million Americans, gradually damages thinking skills and memory. Within a decade of diagnosis, the patient usually dies, and the patient lacks the ability to care for himself or herself.
The disease, named after the German neurologist who originally found it in 1906, has no cure, and its prevalence in the United States is anticipated to triple by 2050, owing to longer lifespans. According to the Alzheimer's Association, the majority of persons with Alzheimer's are over the age of 65, and the risk of developing the disease grows with age.
Dr. Eben Alexander, a neurosurgeon whose near-death experience in 2008 was chronicled in the best-selling book “Proof of Heaven,” believes dementia can teach us about the soul and consciousness.
“Examining the abnormal is the finest method to comprehend the normal in the phenomenon of consciousness,” Alexander, 62, of Charlottesville, Virginia, stated.
Alexander wrote about a buddy, “a hard-core neuroscientist,” whose father appeared to throw off his dementia as death approached in “Proof of Heaven.”
“He'd come to the point where he couldn't say anything meaningful,” Alexander said. However, in his final minutes, the man began conversing with someone who appeared to be his mother, who had been dead for 65 years. “My acquaintance was taken aback by his father's capacity to rise to some quite deep life insights. Given his dementia's progression, it should have been impossible.”
“Very real and common phenomena that show to us again and over again that the physical brain does not create consciousness,” Alexander stated of these moments of terminal clarity. However, it serves as a filter.
“These descents into dementia might serve as a highly educational guidebook on the mind-body connection,” Alexander added.
The soul enters the body at conception or birth, according to most theologians, and exits with the last gasp of breath. According to Ellor, dementia has no effect on the soul any more than an infant's incapacity to speak or think logically has.
“We don't know how to communicate with the soul; it's still there.” “Every Alzheimer's patient is spiritually identical to you or me; they just can't interact on a cognitive level,” he explained.
As a result, soul care for dementia patients must focus on emotion and the senses rather than the brain.
Ellor uses repetition of familiar songs and readings in his worship service for individuals with dementia, and he skips the sermon: “I realize some pastors have to lament the loss,” he jokes.
When feasible, he suggested, it's crucial to incorporate rhythm. “The beat appears to aid in the enjoyment of people who are no longer singing,” he stated.
Common liturgical themes, such as “peace be with you” or “thank God from whom all blessings flow,” seem to resonate with Alzheimer's patients, especially those from Catholic or Episcopal backgrounds.
Ellor admits, however, that enthusiastic attendance at a worship session does not imply that Alzheimer's patients have a spiritual life, nor that “we have reached the soul” by excavating with “Amazing Grace” and a Bible reading.
He speculated, “Perhaps what we've hit is just memory.” Furthermore, there is mounting evidence that playing any familiar music for dementia sufferers helps jog memories.
Residents with Alzheimer's and other forms of dementia are offered worship services, Bible studies, and tai chi, a form of contemplative martial arts, at Sagewood at Daybreak, a senior community in South Jordan, Utah.
The gatherings, which normally number a dozen or more people, are led by Mindy Smith, the dementia-care unit coordinator at Sagewood. She uses illustrations of Adam and Eve and Noah's Ark in the Bible lesson to assist people follow along. The sessions can continue up to 30 minutes, or they can be cut short if participants' enthusiasm wanes, but they're usually having a good time and will often start singing and dancing, she added.
The sessions not only provide spiritual care for the inhabitants, but they also assist in bringing individuals together who were previously isolated. “They'll be more involved in other activities after that,” Smith predicted.
Such sessions can also benefit patients' families, who are typically overjoyed to see their loved ones reclaim some, if only a sliver, of their faith, according to Ellor.
And there's always the possibility that it's more than that. “Yes, people can forget a lot about their past lives, and their capacity to practice their religion is harmed.” “However, we have evidence that people do not lose their sense of self,” said Gordon College's Auday.
They also appear to remember what was essential in their lives before dementia. Catholic patients, according to Ellor, will frequently proudly tell visiting family members that they had attended Mass earlier that day.
Dr. Daniel Amen, a neuroscientist whose clinics around the country use brain imaging methods to address memory loss and other difficulties, is a Christian who believes that when dementia is prevalent, the soul is trapped among damaged neurons in the brain.
“Its vehicle has been damaged, and as a result, the soul's expression has been harmed as well. “I believe death liberates it,” he remarked.
Geyman, the doctor who cared for his wife during her Alzheimer's battle, said the event did not convert him to Christianity; he had previously encountered cardiac arrest and described it as “lights off no music, voices, or angels.”
But, even if we don't understand it, he believes “there's more force out there,” and he speaks as easily of his wife's soul as he does of the cancer she endured.
“Souls on a Walk” was the title of his book, which was inspired by a poem written by his wife Gene. Geyman noted after her death that he had begun to ponder about spirits and “where they go and what they do.”
He doesn't have all the answers, but he concludes his book by praising Gene for overcoming Alzheimer's disease while maintaining her “independent identity, grace, and dignity.”
Even though they only had one set of footprints now, he added, “whatever the future comes, our souls are together.”
Do people with dementia need spiritual needs?
Spiritual care is a crucial component of patient care. Dementia patients require assistance in expressing their spiritual and/or religious concerns, values, and beliefs.
Why do dementia patients see babies?
Giving anxious elders with Alzheimer's or dementia a soft, lifelike baby doll to snuggle is a wonderful, non-drug technique to relax and comfort them. These therapy dolls can even help calm someone who is experiencing acute agitation or has other substantial behavioral issues.
Do people with Alzheimer's forget about God?
Religion, faith, or spiritual beliefs can be quite beneficial to someone suffering from dementia.
To understand why someone with Alzheimer's or dementia could begin to lose faith, you must put yourself in their shoes and consider things from their perspective.
– The person you care about is hesitant to attend church, mosque, or temple because they are unfamiliar with the protocols, traditions, and things they are expected to say. During services, they become disoriented.
– They've lately relocated to a care facility that is no longer in close proximity to their old church.
– They or both of you are doubting their faith, wondering, ‘How could a supposedly kind God have put me in such a horrible situation?'
People with Alzheimer's disease and other dementias frequently abandon their faith and stop attending church, temple, or mosque, but encouraging them to rediscover it can give a source of comfort, excitement, and recollection.
The benefits of faith
It frequently includes sights, sounds, smells, and sensations that are instantly familiar and soothing. Taking communion, for example, involves touch, sight, and taste, and may elicit sentiments of security and comfort.
Hymns or incantations might be particularly beneficial since they evoke memories from the past. On their wedding day, perhaps it was a reading or prayer that was sung or read.
Faith and religious organizations can be a fantastic way to meet new individuals. Many religious organizations include a significant social component, which is an excellent way to get engaged. They're frequently a caring and supporting community that will stand by you in good times and bad.
Faith, religion, and spiritual beliefs can provide an alternative way of looking at the world, encouraging mindfulness and a serene, compassionate approach, regardless of how you both feel about the dementia journey.
Religious services and meetings can be a meaningful activity for a dementia patient to get out of the house.
In order to assist someone, you must first learn about their background and religious affiliations.
Were they frequent churchgoers or did they prefer to go to special services of the year, such as Easter, Christmas, Ramadan, Yom Kippur, Passover, or Diwali?
Did they love working behind the scenes, preparing refreshments after services, volunteering, singing in a choir, or arranging flowers?
Many of these things may be possible for them to participate in, depending on their dementia and their ability, so why not encourage them?
Most importantly, you must guarantee that they have access to the type of service or religious style that they are accustomed to. Some people enjoy loud singing, applauding, and dancing, while others prefer peaceful meditation and are turned off by loud music.
Faith traditions can evoke old, reassuring memories and bring a great sense of fulfillment. So, if the person you care about used to appreciate their religion, there's a good chance they still do.
Is dementia a disease?
Dementia is a generic word for a loss of capacity to recall, think, or make judgments that interferes with daily tasks. The most frequent form of dementia is Alzheimer's disease. Dementia is not a normal aspect of aging, even though it usually affects older people.
How does Alzheimer's affect spirituality?
Because they couldn't drive due to their cognitive impairment, getting to church and participating in church activities was crucial. One individual relied on the church for transportation to church services. Another said she was now watching church on television. All 15 individuals relied heavily on their families for support. For transportation to church and church activities, ten participants relied on family members. Their relatives were also responsible for reminding them about church-related meetings and events.
The symptoms of Alzheimer's disease had an impact on spiritual practices as well. Some people found that the disease's symptoms (low attention span, poor reading comprehension, and memory loss) made it difficult to engage in spiritual practices. Others found a newfound sense of purpose in the things that mattered most to them. Three people stopped listening to church sermons because they couldn't understand what the preacher was saying. Only one man said he didn't pray anymore because “I think I just get lost and forget what I'm doing.” Reading the bible became such a painful chore for four participants due to a loss of reading comprehension that they no longer read it. These four people also had the lowest MMSE scores in the group, which corresponds to how cognitive deterioration is supposed to occur. The feelings of these four participants were summarized in the following statement from a 75-year-old man:
You've read one thing, and now you're not sure what you're reading. It makes sense, but I don't get why you think you're reading one thing and then it switches to another.
This challenge was overcome by one of the four contestants. “To keep my eyes from falling off the sentences, I put a little ruler with a black edge on the page and read down from line to line.”
Some of the participants had forgotten bible verses that they had remembered in the past. The words to Psalm 23, her favorite verse, were lost on a 67-year-old woman. She was able to say the following verses on her own when the researcher prodded her with the first two lines of the passage. She was both astonished and pleased that she remembered the verses. This is a significant finding because it shows how a modest intervention can help people with Alzheimer's connect with a meaningful memory.