What To Watch For
Here are some of the warning signs identified by dementia experts and mental health organizations:
Difficulty with everyday tasks. Everyone makes mistakes, but people with dementia may find it increasingly difficult to do things like keep track of monthly bills or follow a recipe while cooking, the Alzheimers Association says. They also may find it hard to concentrate on tasks, take much longer to do them or have trouble finishing them.
Repetition. Asking a question over and over or telling the same story about a recent event multiple times are common indicators of mild or moderate Alzheimer’s, according to the Cleveland Clinic.
Communication problems. Observe if a loved one has trouble joining in conversations or following along with them, stops abruptly in the middle of a thought or struggles to think of words or the name of objects.
Getting lost. People with dementia may have difficulty with visual and spatial abilities. That can manifest itself in problems like getting lost while driving, according to the Mayo Clinic.
Personality changes. A loved one who begins acting unusually anxious, confused, fearful or suspicious becomes upset easily or loses interest in activities and seems depressed is cause for concern.
Troubling behavior. If your family member seems to have increasingly poor judgment when handling money or neglects grooming and cleanliness, pay attention.
People with mild cognitive impairment are at an increased risk of developing dementia.
Types Of Questions A Person With Dementia Might Ask
The questions people living with dementia ask can challenge us. You may recognise some of these from your own experience:
- When is dad coming to visit?
- Will I be going home soon?
- Shall I set the table for the guests?
- You seem nice to me… but who are you?
- Why have you stolen my purse?
- Who are those little people by the window?
For those close to people with dementia, how to respond to their questions can be a daily challenge. Is it acceptable to lie ever? Or should we just tell the brutal truth – always?
How we respond will affect how the person and us feel and behave, now and in the future. If we get things wrong we can erode the foundations of a relationship that may well be already strained.
When Is It Okay To Lie To Someone With Dementia
Tim Beanland, Head of Knowledge Management at Alzheimer’s Society, discusses the difficult choices and situations around lying to a person with dementia to protect their feelings.
I try not to lie, honestly, but some things push the boundaries: Socks! You shouldnt have No, I’d love to have your mother visit and often to my subsequent regret But I’ve only had one drink all evening.
Being a bit flexible with the truth is just part of the social contract, it seems – the price we pay for jogging along in relative peace.
But what if one of us has dementia? What price comes with telling the truth then?
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No Longer Caring About Their Appearance
Your parents actions and appearance may speak louder than words. They may lose interest, feel depressed, or slowly stop taking time for themselves. If your mom loved doing her hair and makeup each day but says she no longer feels like it, she may have stopped caring.
If your dad is skipping showers, or is wearing the same clothes each day without washing them, he may say something like, Its easier, or I dont have time. Changes in your loved ones appearance and hygiene or if their personality seems lethargic or apathetic are common dementia signs that may be downplayed.
Treatment And Care For Lewy Body Dementia
While LBD currently cannot be prevented or cured, some symptoms may respond to treatment for a period of time. An LBD treatment plan may involve medications, physical and other types of therapy, and counseling. A plan to make any home safety updates and identify any equipment can make everyday tasks easier.
A skilled care team often can suggest ways to improve quality of life for both people with LBD and their caregivers.
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Coping With Cognitive Changes
Some medications used to treat Alzheimer’s disease also may be used to treat the cognitive symptoms of LBD. These drugs, called cholinesterase inhibitors, act on a chemical in the brain that is important for memory and thinking. They may also improve hallucinations, apathy, and delusions. The U.S. Food and Drug Administration has approved one Alzheimer’s drug, rivastigmine, to treat cognitive symptoms in Parkinson’s disease dementia. Several other drugs are being tested as possible treatments for LBD symptoms or to disrupt the underlying disease process.
The Difference Between Confabulation And Lying
Family members of people with dementia who confabulate often become frustrated and may feel like their loved one is intentionally being dishonest and deceiving them. It’s important to understand that confabulation, although inaccurate, is not an intentional choice, but rather an unintentional effect of dementia, whereas lying involves making a deliberate choice to misrepresent the truth.
Understanding the difference may make it a little less frustrating when confabulation occurs.
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Common Changes In Behaviour
In the middle to later stages of most types of dementia, a person may start to behave differently. This can be distressing for both the person with dementia and those who care for them.
Some common changes in behaviour include:
- repeating the same question or activity over and over again
- restlessness, like pacing up and down, wandering and fidgeting
- night-time waking and sleep disturbance
- following a partner or spouse around everywhere
- loss of self-confidence, which may show as apathy or disinterest in their usual activities
If you’re caring for someone who’s showing these behaviours, it’s important to try to understand why they’re behaving like this, which is not always easy.
You may find it reassuring to remember that these behaviours may be how someone is communicating their feelings. It may help to look at different ways of communicating with someone with dementia.
Sometimes these behaviours are not a dementia symptom. They can be a result of frustration with not being understood or with their environment, which they no longer find familiar but confusing.
Which Dementias Cause Hallucinations
Hallucinations are most common for people with Lewy body dementia, an illness caused by the buildup of proteins called Lewy bodies that disrupt communication between brain cells throughout the brain or kill the cells altogether. Visual hallucinations will often occur in the early stages of the disease, though they eventually stop somewhere in the middle stages and wont recur. People with Lewy body dementia often fluctuate between good days, when theyre thinking normally or at least fairly well, and bad days. In the early stages, those bad days are likely to include visual hallucinations.
Hallucinations will also occur for people with Parkinsons disease with dementia, and for people with Alzheimers. Both those diseases are also associated with a buildup of proteins in the brain. With these dementias, though, hallucinations are more likely to be associated with hearing or feeling. Someone might have conversations with an imaginary person, for example, or think theyre being touched by something that isnt there.
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Who Is Most At Risk For Dementia
The number one risk factor for dementia is age, and it increases exponentially for each decade past age 60. Genetics also play a role if you have a parent or sibling with dementia, you are somewhat more likely to develop it yourself.
Dementia also disproportionately affects women and communities of color: According to the Alzheimers Association, about two-thirds of all people with dementia are women. Older Black and Hispanic Americans are up to two times as likely to develop dementia as older white Americans.
There are also many modifiable risk factors that may affect different populations in different ways, says Rebecca Edelmayer, Ph.D., senior director for scientific engagement for the Alzheimers Association. For instance, people with conditions such as high blood pressure, diabetes, and high cholesterol are at higher risk, because they put the brain in a more vulnerable state, in which the pathology of dementia can take hold.
She also points out that Black and Hispanic communities have also been historically underrepresented in clinical trials for new therapies, and encourages individuals from all communities to see if they are eligible for ongoing trials at Alzheimers Associations TrialMatch site.
Do Dementia Patients Lie
Emotions like anger, anxiety and confusion often leave elders feeling vulnerable and taken advantage of, which causes them to become defensive and accusatory as they try to make sense of what they cannot understand or remember. Misplacing and hiding personal items is a hallmark of dementia, which can be terribly disorienting and frustrating for patients and caregivers alike. When you add in a bit of paranoia and delusional thinking, a lost purse or medication bottle can suddenly spur a senior to falsely accuse their family caregiver of theft.
Unfortunately, there are many instances where people have taken advantage of someone with diminished mental capacity. However, when dealing with the cognitive changes in dementia it is far more likely that helpful and well-meaning gestures are misconstrued as acts of trickery or deceit. For example, a dementia patient may ask a caregiver or family member to launder a piece of clothing, repair their eyeglasses or purchase groceries using cash they provide. When they find their favorite blouse, glasses or money is gone, they fail to recall their own request or misconstrue the information theyve been provided. Accusations can fly and then the caregiver is left trying to explain themselves to someone who is impossible to reason with.
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Building A Lewy Body Dementia Care Team
After receiving a diagnosis, a person with LBD may benefit from seeing a neurologist who specializes in dementia and/or movement disorders. Your primary doctor can work with other professionals to follow your treatment plan. Depending on an individual’s particular symptoms, physical, speech, and occupational therapists, as well as mental health and palliative care specialists, can be helpful.
Support groups are another valuable resource for people with LBD and their caregivers. Sharing experiences and tips with others in the same situation can help people find practical solutions to day-to-day challenges and get emotional and social support.
Coping With A Diagnosis
Being diagnosed with dementia is a life-changing experiencefor both you and your loved ones. It can turn your world upside down and leave you grappling with a host of conflicting emotions, from shock, anger, and grief to profound sadness and isolation.
While there is currently no cure for dementia, a diagnosis doesnt mean that your life is over. There are treatments available for the symptoms. There are also steps you can take to help slow the progression of the disease and delay the onset of more debilitating symptoms, enabling you to prolong your independence and live a rich and full life for longer.
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Conditions With Symptoms Similar To Dementia
Remember that many conditions have symptoms similar to dementia, so it is important not to assume that someone has dementia just because some of the above symptoms are present. Strokes, depression, excessive long-term alcohol consumption, infections, hormonal disorders, nutritional deficiencies and brain tumours can all cause dementia-like symptoms. Many of these conditions can be treated.
Confusion About Time And Day
When you eat breakfast, but then realize its dinner time, or you cant remember the day of the week without looking at a calendar, that can be a sign of cognitive impairment. Caccappolo says patients who have more advanced dementia may get up in the middle of the night and get dressed. It may also become increasingly difficult to know what season or even what year it is.
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Difficulty Completing Normal Tasks
A subtle shift in the ability to complete normal tasks may indicate that someone has early dementia. This usually starts with difficulty doing more complex tasks like balancing a checkbook or playing games that have a lot of rules.
Along with the struggle to complete familiar tasks, they may struggle to learn how to do new things or follow new routines.
Determination Of Body Axis Orientation
To determine the orientation of the body axis we asked patients to lie down from a sitting position on the side of the examination bed . We took a digital photograph using a camera mounted on a metal frame above the patient. Immobility as a possible cause of the obliqueness was excluded if patients were able to correct a skewed body axis angle on verbal directions from the examiner. The procedure was repeated from the other side of the bed for 88 patients.
The patients were not specifically asked to remove their footwear before lying down. We defined the body axis angle as the angle between the patients body axis and the longitudinal axis of the bed . The angle was assessed by an examiner blinded to the results of the cognitive tests.
Fig 1Measurement of body axis angle between body axis and longitudinal axis of bed. Intact orientation of body axis. Failed orientation of body axis
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Why Might A Person With Dementia Ask Difficult Questions
The Society contributed to a 2016 report by the Mental Health Foundation which addressed this topic. A key conclusion was that these kinds of questions often arise when the person is living in a different reality and/or has different beliefs from those around them.
These differences may become more apparent as dementia progresses but they are not limited to the conditions later stages. They include:
- behaving as if a younger version of themselves
- beliefs sometimes strongly held that are false to others
- unfounded suspicions or allegations about others
- seeing things that arent there .
We need to understand that these realities and beliefs often have meaning for the person with dementia, and we should not belittle or dismiss them.
Rather, as with changes in behaviour, the challenge when supporting someone is to get behind the words, rather than attribute them as simply dementia symptoms.
For example, if someone with dementia asks for their dad, they may be expressing a need for comfort which is not being met. If someone says they are setting the table for ‘guests’, maybe it’s because they are using older, more familiar memories to make sense of the present. When someone with dementia invents a story, it may be a coping strategy to support self-esteem.
Selecting The Correct Response To Reduce Distress
We instinctively want to be towards the whole truth’ end of the spectrum, but we also want to minimise any distress our response causes to the person with dementia.
But these aims often contradict, leaving us to seek a balancing act or a least-bad trade-off.
One consequence of this approach is that it supports a direct lie only if to do everything else would cause the person significant physical or psychological harm. Professionals sometimes call this a therapeutic lie, but it needs to be seen a bit like antipsychotic drugs: use only under very selected conditions and then with care.
Its also really important to recognise how hard this balancing act can be, particularly if the persons realities/beliefs fluctuate for example, they are time-shifted only some of the time.
Carers can often be unfairly accused, find that their own reality is being suppressed, or feel unnecessarily guilty if they occasionally get their response wrong.
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Forgetting Holidays Or Important Dates
Although its normal to occasionally forget an appointment every now and then, it is unusual to forget important dates like birthdays, anniversaries, or holidays regularly. Another early sign of dementia is consistently losing track of the date or even the time of year. Your mom may say shes misplaced her calendar or your dad may say he cant find his watch but beware of these subtle and early signs of dementia.
Finding The Message In Dementia Symptoms
When it comes to understanding dementia symptoms, Kallmyer says that there are limits to what a caregiver can do. âSometimes, the behavior of a person with dementia will have no meaning,â she says. âThe disease is just destroying their brain cells, and their actions have no rhyme or reason.â
But other times, Kallmyer says, seemingly irrational dementia symptoms will cloak a message that you can decode. âWe like to think of all behaviors as forms of communication from a person with dementia,â she tells WebMD. Taking the time to interpret and understand could not only get your loved one what they need, but also bring you closer together. While the relationship you once had with your loved one will fade away, you may forge a new and different but still meaningful connection.
John and Mary Ann Becklenberg canât know what the future holds for them, but for now theyâre focusing on what they have.
âI think that weâve actually felt closer as a result of this disease,â says John Becklenberg, who is the primary caregiver for his wife. âIâve had to slow down some and take more time with her.â
She also has some advice. âDespite the difficulties, Iâd urge caregivers and people with to try to find the humor in their lives,â she says. âJohn and I laugh about things, and it helps. People really need to know that.â
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