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Do You Tell Dementia Patients The Truth

Its Not A Friendship Anymore

Why do people with dementia lie?

Visiting Auntie Col can be exhausting. I will feel quite depressed at her living arrangements. To me she is a prisoner in her own increasingly untidy and chaotic home.  She is on her own apart from rushed visits from carers who cover her physical needs and a twice weekly trip to a daycare centre.  We discuss moving into residential care, more for the social aspect than anything else but she gets upset and always makes a comment along the lines of who are you to tell me what to do?  This usually stops me in my tracks because at heart I feel that its not my business to impose my will on her; who am I, indeed, to presume to know whats best for her?  Her dementia isnt so bad that she is a danger to herself, shes just unhappy.  But if she chooses loneliness, thats up to her, right?

A visit to a friend of Cols got me thinking about my attitude.  Margaret has known Col since they met at during the 1970s at an exercise class.  This class, which was all the rage at the time, seemed to involve swinging baseball like clubs around, one in each hand.  The Health and Safety implications seem quite alarming now and I dont know if anyone else remembers this at all but I do recall my mum heading off to the village hall to such a class, looking like she was going out to administer a punishment beating.

What To Do If They Refuse To Let Go Of The Idea

Sometimes, your older adult will refuse to let go of the idea of going home, no matter how much you try to soothe or redirect.

If that happens, you might need to agree to take them home and then go for a brief car ride.

Experiment with how long it takes before you can take them home without protest. Or, suggest a stop at the ice cream shop, drugstore, or grocery store to distract and redirect.

If its not possible to actually take them out or get into the car, even going through the actions of getting ready to leave can still be soothing. This will shows that you agree with them and are helping to achieve their goal.

Meanwhile, the activities of getting ready give you more chances to distract and redirect to something else.

Keep in mind that not everything you try will work the first time. And even if something works once, it might not work the next time.

Do your best to stay calm, flexible, and creative this technique gets easier with practice.

Arguments In Favor Of Truth

According to Beauchamp and Childress, the main arguments obligating veracity are the following.

Respect for autonomy

Lies and deceit breach the autonomy of a person. Patients cannot make valid decisions unless they are fully informed. That usually involves informed consent to treatment, but of course, other decisions need to be made regarding legal aid, driving, finances, and planning for the future. The argument is not as obvious in patients with profound dementia who are no longer competent free agents and whose self-governance may be seriously limited. Agich has argued that the liberal concept of autonomy, which stresses independence and freedom from interference from others, is neither appropriate nor suitable here. Respect for the autonomy of dementia sufferers entails a commitment to identify and establish the conditions necessary to continue their lives in the way they are still able to and as closely as possible to the way they have normally lived. Such a commitment should involve hope resulting, in Agich’s view, from meaningful relations with others. Could delivery of the devastating truth serve them better than not telling the truth?

Need for trust in doctor-patient relationship

Acknowledgment of reciprocal obligations, fidelity, and promise keeping

What Else You Can Do

DAprix is adamant that therapeutic fibbing is not the one-size-fits-all answer. She also recommends that caregivers consider these other strategies:

Try changing the subject. Instead of lying or getting into an argument, redirect the person to a new topic.

Empathize. Listen for the emotion driving the patients behavior and validate it, rather than argue with the facts. For instance, if the person is angry or agitated, acknowledge those feelings as real, which they are, even if the object of their ire is not.

Do not try to force patients to see things through your eyes. They simply may not be able to do so, and any efforts may lead to greater agitation or suffering.

Accept their reality even when it differs from your own. If your loved one is okay and not in danger, let them be in their own world, DAprix counsels.

Hopefully this information will help the reader and his brother come to the same page.

Tell Me About Your Home

Do You Tell Dementia Patients The Truth?

A home may not mean what you assume it does for your loved one. They might be thinking of a childhood home or another place they lived when they were younger.

Going back to that place in their mind represents an important time, and you can explore it further. By getting to the heart of the matter, you have the opportunity to allow your loved one to express feelings and emotions.

Views Of People With Dementia

Pratt and Wilkinson examined the responses of people with dementia who had been given their diagnosis. The subjects were able to identify both the advantages and disadvantages to being given their diagnosis – some of the advantages are shown in Box 2. One of the positive outcomes seemed to be that patients finally had a context within which to place worrying things that were happening to them.

The disadvantages were likely to be diagnosis-related, rather than the result of disclosure. For example, subjects cited the limitations imposed on their activities of daily living and the negative effect on their confidence. All those questioned felt that people should be told their diagnosis, and that it should be given as early as possible. A final argument supporting disclosure of a diagnosis is the accuracy with which the diagnosis can now be made. Meyers reports that a greater than 90% accuracy of modern diagnostic criteria negates concern about unduly alarming people who have been misdiagnosed.

Preparing For The Diagnosis

The person undergoing the assessment for dementia should be allowed to decide if they want to know if the diagnosis is confirmed.

In general, if a person is aware that they are going for a diagnosis they will be able to make that choice.  

It is recommended that a person with dementia be told of their diagnosis. However, a person has a right not to know their diagnosis if that is their clear and informed preference.

Assess The Possibility Of Other Problems

Sometimes when a person repeatedly asks to go home, they are in discomfort. Their discomfort could be emotional or physical, or both.

Check on the possibility of pain, and make sure that all their lab results are current, especially ones that check for urinary tract infections. Urinary tract infections are common as people get older and can lead to confusion and even delirium.  

A person with dementia may have difficulty communicating how they feel, so you will need to sleuth out potential problems. Your loved one may be lonely or depressed.

Talk with the care staff to determine if they have noticed behavior changes, such as increasing isolation or agitation. 

Arguments In Favour Of Truth

Should you tell a dementia patient that they are being moved to a Memory Care Facility?

According to Beauchamp and Childress the main arguments obligating veracity are the following.

Respect for autonomy

Lies and deceit breach the autonomy of a person. Patients cannot make valid decisions unless they are fully informed. That usually involves informed consent to treatment but of course there are other decisions to make regarding legal aid, driving, finances and planning for the future. The argument seems not so obvious in the case of patients with profound dementia who are no longer competent free agents and whose self-governance may be seriously limited. Agich has argued that the liberal concept of autonomy which stresses independence and freedom from interference from others is neither appropriate nor suitable here. Respect for the autonomy of dementia sufferers entails a commitment to identify and establish the conditions necessary to continue their lives in the way they are still able to, and as closely as possible to the way they have normally lived. Such a commitment should involve hope, resulting in Agich’s view, from meaningful relations with others. Could delivery of the devastating truth serve them better than not telling the truth?

Need for trust in doctor/patient relationship

Acknowledgement of reciprocal obligations, fidelity and promise keeping

Alzheimers Disease: When To Tell An Untruth

Weve all been raised as kids to never tell a lie, yet isnt there a gray area in many instances? Especially when it comes to telling vulnerable people the cold hard truth. Most of us dont see the harm in telling a white lie, like telling someone their new haircut looks nice when it really doesnt suit them at all. Or saying you cant make a PTO meeting because you have to work when you really just want to sit on your couch and put up your feet after a long day of adulting. Were all guilty of this. But there are degrees of lies, right? Keeping a big lie like hiding money from your spouse or an affair is greatly frowned upon, to be sure. Yet somewhere in the middle is another gray area, having to do with how we handle delicate situations involving our aging loved ones particularly those suffering from Alzheimers disease. If you have a loved one in end of life care in Santa Clara and elsewhere, you may have come up against this very same issue.

When Inaccurate Beliefs And Memories Are Hurtful

Unfortunately, therapeutic fibbing isnt suitable for all situations in which your loved one has inaccurate memories or misguided beliefs. Sometimes, patients with Alzheimers disease experience paranoia and delusions. Coupled with the frustration of misplacing belongings and household items, its common for these circumstances to give rise to suspicion and even hurtful accusations. A belief that her grandson stole money from her wallet is not one that you want to affirm. Of course, there are circumstances in which caregivers and family members have taken advantage of loved ones with Alzheimers disease, but if youre certain an accusation is false, youll need to attempt to resolve the situation.

The important thing in responding to these beliefs and accusations is to not take it personally, and that the disease is the cause, not your loved one. Be tolerant and patient, and respond with kindness while gently explaining to your loved one what actually occurred. For instance, if your loved one is accusing her caregiver of stealing her jewelry, you can usually resolve the situation by locating the misplaced item and explaining that it was simply misplaced. If your loved one believes that a family member has stolen an item of clothing when they actually took it to the dry cleaner, explain clearly, but gently and with kindness, that the item is being cleaned and will be returned promptly. If possible, keep records and receipts that you can use to backup your explanations.

Telling The Truth To People With Dementia

Get advice on how to deal with difficult situations around telling the truth to people with dementia.

Making decisions and managing difficult situations

Situations may arise where a person with dementia asks questions that leave carers feeling unsure about whether to answer honestly. This could be because the answer would be distressing to the person for example, reminding them that a relative or partner has died. In cases such as these, carers can look for different ways of handling the situation.

If the person says something that you know is not true or possible, try to see past what they are saying, and instead look at the emotions behind it. For example, if they are asking for their mother, who is no longer alive, it may be that they are feeling scared or need comforting. By meeting the needs behind what is being said, it can be possible to offer emotional support while avoiding a direct confrontation over the facts.

In some situations you may decide that not telling the truth is in the persons best interests. If you do decide that the truth would be too distressing for the person, there are other options available.

Each case should be judged individually and the course of action should be chosen to suit the specific time and situation. An ideal solution is one that you feel comfortable with and also considers the persons interests.

Kind Calming Ways To Respond To I Want To Go Home

Do You Tell Dementia Patients The Truth?

These suggestions will put you on the right track, but its a good idea to get creative and come up with responses that are tailored for your older adults history, personality, and preferences.

1. Reassure and comfort to validate their needsSometimes saying I want to go home is how your older adult tells you theyre tense, anxious, scared, or in need of extra comfort. 

Approach your older adult with a calm, soothing, and relaxed manner. If you remain calm, it often helps them calm down too.

If they like hugs, this is a good time for one. Others may prefer gentle touching or stroking on their arm or shoulder or simply having you sit with them.

Another way of giving extra comfort and reassurance is to give them a soothing blanket, therapy doll, or stuffed animal.

2. Avoid reasoning and explanationsTrying to use reason and logic isnt recommended when someone has a brain disease. It will only make them more insistent, agitated, and upset.

Dont try to explain that theyre in their own home, assisted living is now their home, or they moved in with you 3 years ago.

They wont be able to process that information and will feel like youre not listening, you dont care, or that youre stopping them from doing something thats important to them.

3. Validate, redirect, and distractBeing able to redirect and distract is an effective dementia care technique. Its a skill that improves with practice, so dont feel discouraged if the first few attempts dont work perfectly.

What Do You Think Is Wrong With You

I assumed that the participants had adequate insight if they were able to give the correct diagnosis or, at least, to describe adequately their main symptoms. Of the 30 participants, 14 fulfilled these criteria. Most complained of problems with memory. No participant used the word dementia, but a few were able to accurately describe their conditions. Examples are shown in the first box.

The rest of the participants either denied any problems or gave implausible explanations for their predicaments, such as: loneliness,old age,stomach upset, and the like. Four patients simply said don’t know without further elaboration.

Responding To Extravagant Stories

Its not uncommon for people with Alzheimers disease to have memories of people and events that never existed. Alzheimers.net discusses a touching story of a readers grandmother who had Alzheimers disease and believed that her daughter was in a relationship with a man unknown to the family. The patient created an elaborate story, including details of the mans personality, their relationship, and even trips she believed the couple had taken overseas.

So, how did the family react? They chose to play along, engaging in conversation with their loved one as she happily filled them in on all the details of this man, and relationship with her daughter, that never existed. While this solution may not be the right one for every family, in this familys case, they felt it brought them closer. Playing along with the story didnt bring any harm to their loved one or her daughter, who was at the center of the story. While they could have attempted to correct her and even argue with her to attempt to bring her back to reality, doing so would have surely caused confusion, frustration, and perhaps even agitation but for what purpose? In this instance, there was nothing to gain in the long run from refusing to entertain their loved ones reality.

Ethical And Moral Considerations

The ethics and morality of therapeutic lying are key when discussing its place in dementia care. Currently, no official UK healthcare guideline justifies lying to patients.15 For example, the General Medical Council states that doctors must be honest and trustworthy in all communication with patients.25 These guidelines are based on fundamental elements of modern medical ethics. An example of one such principle is the patients right to autonomy, their right to make informed decisions regarding their care.26

This principle would seem to require total veracity with patients regarding their care and situation. However, autonomy is complicated in the case of dementia patients as it assumes competency. Competency requires the capacity to evaluate the risks and benefits of treatment, an ability often lost in later stage dementia. The ethical principles of non-maleficence, the duty to do no harm, and beneficence, the duty to do good, are also paramount in ethical debates surrounding therapeutic lying. However, these principles often conflict with autonomy, as the necessity to minimise patient confusion or distress is often antagonised by the moral obligation to tell the truth.27

Supporting Your Loved One As They Learn Of Their Diagnosis

What to Do When Someone with Dementia says “I Want to Go Home” (The BIG Mistake You’re Making)

Without question, there are persons with Alzheimers or other forms of dementia who may not be impacted when receiving the news of their diagnosis because they are at a stage of the disease that leaves them too forgetful to retain it, or unable to understand it. But in those situations where the diagnosis is being presented to someone capable of understanding, how might we best present the information, and give support to our loved one?

  • Include your loved ones physician to explain the medical diagnosis and options available for medical management.
  • Tailor your explanation to your loved ones level of understanding.
  • Stay positive. Support your loved one by reminding them that you are going to do everything you can to support them through this illness.
  • Choose appropriate terminology. An alternative to the labels of Alzheimers disease or dementia might be memory problems.
  • Become an informed caregiver. Information is abundant through local and national organizations, online, and books.

Communicating With A Loved One With Alzheimers Disease

Communicating with a loved one who has Alzheimers disease is challenging in many ways, and it can be frustrating for both caregivers and their loved ones. Keep these communication tips in mind to guide you through effective communication with your loved one throughout the progression of the disease.

While every situation is different, lying to your loved one with Alzheimers disease is an appropriate response in many situations. Knowing the techniques for handling inaccurate memories and symptoms like delusions and paranoia will help you develop a compassionate response in every situation, validating and reassuring your loved one and offering gentle corrective explanations when necessary. Having the skills to respond appropriately will help to maintain a positive, stress-free relationship with your loved one. 

Telling The Truth Could Be Cruel

Most of us are taught from a young age that any kind of lying is horrible and dishonest, especially lying to family and anyone we care about and respect.

So when we hear about using therapeutic fibbing to lie to someone with dementia, it might seem cruel and wrong at first.

But always sticking to the truth, especially about an emotional subject or something trivial, is more likely to cause your older adult pain, confusion, and distress.

That happens because dementia prevents people from properly processing and retaining information.

Plus, having short-term memory issues means theyll probably soon forget the conversation, so it will come up again.

Telling the truth each time forces them to experience fresh distress over and over again.

Is it necessary to cause them so much distress, especially when the truth you tell them is likely to be misunderstood or quickly forgotten?

Limitations Of Therapeutic Lies

When the notion of therapeutic lies was first introduced, experts such as Blum were entirely opposed to it, concluding that deceiving patients with dementia would allow healthcare professionals to manipulate their thoughts and actions. This early opinion determined that lying to dementia patients was a violation of the assumed trust between patients and their carers.17 If this point of view is taken, a potential risk of paternalistic medicine can be seen, where the opinion of healthcare professionals is indisputable, and patients are obliged to comply.

Another concern surrounding the use of therapeutic lying is the potential for recognition of lies.18 Kitwood, the founder of person centred dementia care, believed lying to be part of malignant social psychology, behaviours that undermine the wellbeing of a patient. Treachery, one part of malignant social psychology, is described as deceptive behaviours used to manipulate a patients actions. Kitwoods work argues that lying to a patient with dementia depersonalises them, as the person telling the lie has dominance over the situation.19 Thus, the literature shows a reoccurring fear that lying to a patient represses their social control. If this view is taken, even lies told therapeutically are inappropriate.

The Case For Disclosure

Do You Tell Dementia Patients The Truth?

Several authors have discussed the benefits of disclosure . For example, disclosure while the person is in the early stages of dementia gives them the opportunity to do things that may be important to them. They may wish to:

– Plan for the future

– Resolve family issues or ensure family members security

– Put their financial affairs in order

– Attend to spiritual matters

– Travel, take a holiday or achieve a lifelong ambition

– Consider the available treatments or look into complementary therapies.

There is no cure for dementia at present. However, several drugs have been approved for treatment of the most common cause of dementia, Alzheimers disease . These are donepezil, rivastigmine and galantamine, known as acetylcholinesterase inhibitors. Research has shown that as AD progresses there is decreased production of acetylcholine but that in people taking AChE inhibitors the acetylcholine produced is preserved for longer. In real terms, this means that in many people taking these drugs disease progression will be slowed, if not temporarily halted.

The drugs have been approved by the National Institute for Clinical Excellence for people with mild to moderate AD. Mild AD is usually associated with a mini mental state examination score of 21 to 26, moderate AD with an MMSE of 10 to 20 . Severe AD is usually associated with an MMSE of less than 10.

Views Of Carers Patients And Their Peer Group

The view of carers’ on information given by health professionals is sparse. A recent study has examined the views of relatives of sufferers of Alzheimer’s disease: 83% of carers expressed a wish that their relative should not be told . Despite this, 71% of the same carers indicated that they themselves would like to be told if they were developing the illness. A similar, although smaller, survey reported different findings: 57% of first-degree relatives wished the sufferer to be informed . Reasons for this included: relatives not wishing to hide information from their loved ones; that they would probably work it out anyway; and making preparations for their future.

Much less is known about patients’ preferences. One may gain some insight into the views of elderly patients with dementia by examining the views of other elderly peer groups. One such study found that 90% would have wished to be told of the diagnosis, their reasons mainly being in order to make plans for care, obtain a second opinion and settle family matters . More recent studies have shown similar findings .

What Information To Share

As a general guideline a number of things will need to be explained: 

  • An explanation as to why the symptoms are occurring.
  • A discussion of the particular form of dementia, in terms that are appropriate to the persons level of understanding.
  • Any possible treatment for symptoms.
  • The specialised services and support programs that are available for people with dementia.

Informing a person that they have dementia is a serious matter, which needs to be handled with great sensitivity and dignity.

It can be a very stressful time for everyone. Dont forget to look after yourself.

Dementia Australia offers confidential counselling and support for families, carers and people with dementia.

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