How To Share The Diagnosis
Sharing the initial news of the diagnosis may come from any one of a number of people.
The doctor or specialist, assessment team or members of the family may talk to the person about the diagnosis either individually or as a group.
You might consider having someone present at the time of telling to provide extra support.
Planning ahead about the best way to share the diagnosis will make it easier.
As individual responses will be different, careful consideration must be given to every individual situation.
There are some considerations that will be generally helpful when talking with a person about their diagnosis:
- Ensure that the setting is quiet and without competing noise and distractions.
- Speak slowly and directly to the person.
- Give one message at a time.
- Allow time for the person to absorb the information and to form questions. Information may need to be added later.
- Written information about dementia can be helpful to take away and provides a helpful reference. Dementia Australia has information written specifically for people with dementia. In some instances this information is available in video or audio format. Contact the National Dementia Helpline on 1800 100 500.
- Ensure that someone is available to support the person after being told about the diagnosis.
Planning For The Future: Tips For Caregivers
Making health care decisions for someone who is no longer able to do so can be overwhelming. Thats why it is important to plan health care directives in advance. To help plan for the future, you can:
- Start discussions early with your loved one so they can be involved in the decision-making process.
- Get permission in advance to talk to the doctor or lawyer of the person youre caring for, as needed. There may be questions about care, a bill, or a health insurance claim. Without consent, you may not be able to get needed information.
- Consider legal and financial matters, options for in-home care, long-term care, and funeral and burial arrangements.
Learning about your loved ones disease will help you know what to expect as the dementia progresses and what you can do.
How To Recognize Early Dementia Symptoms
The Alzheimers Association identifies 10 early signs and symptoms of dementia that can help Alzheimers experts and medical professionals diagnose dementia earlier:
Diagnosing Alzheimers and related forms of dementia early may allow someone experiencing the symptoms access to new drug trials, giving them a broader treatment plan with more options. Additionally, an early diagnosis can help you and your family plan financially and legally for your future.
Caring Approach For Dementia Patients
As you can see, people living with Alzheimers disease can be unpredictable and require constant supervision to maintain their safety. The goal is to provide individual-centered care to promote compliance and to maximize outcomes.
Caregivers should incorporate activities that interest those living with the disease. It is highly recommended to collect clinical data about personal hobbies, professions, skills, and different activities. Some patients with dementia lose the ability to control their impulses. Therefore, they are unable to formulate intellectual judgment and often unaware of misconduct.
However, they can retain life skills acquired many years ago. For instance, they might clean all day if they used to be a housekeeper in the past. Others love playing with the phone if they held telemarketing or communication jobs in the past. In summary, they are often 20 years behind and remain trapped in the past.
A former preacher might spend most of the day reading biblical scriptures. However, a singer might spend the day singing old lyrics. I must also add that people living with dementia respond well to music and art therapy. I strongly encourage relationship building to promote trust.
Tips For Having The Talk With A Parent About Dementia Symptoms
Adult children commonly have a hard time broaching the subject of dementia with a loved one. Ruth Drew, Director of Family and Information Services at the Alzheimers Association, says, I think people are worried about hurting a family relationship or upsetting people that they care about.
Drew also says that broaching the topic early helps everyone. When you know what youre dealing with upfront, then you can plan, she adds. The person can have a voice in what happens next.
If your loved one is exhibiting dementia symptoms, it is crucial to have the talk with him or her as soon as possible.
Here are six tips for talking with someone you love about dementia:
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Or Does It Make Sense To Tell Them At All
My moms best friends husband died recently. My mom had known him for more than 60 years, but I debated whether to tell her. Shes had dementia since the fall of 2012 and retains almost no new information.
We call her friend often and my mom asks after her husbandan old memory the disease hasnt stolen from her. I decided she should know.
I sat down next to my mom in the memory care unit where she lives and said, We need to call your friend. You know her husband was not well for some time. He died yesterday. My mom was shocked and readily accepted my offer to call her friend on my phone.
When they hung up, my mom and I talked about how good her friend sounded. We sat quietly for a few moments and then my mom said to me, Did you talk to her? How did she sound?
The experience made me wonder if I made the right choice to tell her.
When they hung up, my mom and I talked about how good her friend sounded. We sat quietly for a few moments and then my mom said to me, Did you talk to her? How did she sound? She had forgotten that she spoke with her friend, but she remembered that her husband had died.
The experience made me wonder if I made the right choice to tell her and what I should do if she forgets in the future. For guidance, I turned to Stephanie Rohlfs-Young, director of volunteer programs at the Alzheimers Association. The following is an excerpt of our conversation, edited for clarity and length.
MemoryWell: How should you approach it and what should you say?
Patient Who Does Not Want To Know
Nine participants did not want to know what was wrong with them or to receive any information about their illness. Although we did not asked them why, some of them spontaneously tried to explain their choice. Their motives seem to display a wide spectrum from probably full insight through more or less conscious decisions not to know the truth to complete denial of their illness .
I could not find any clinical or demographic characteristics indicating those who would prefer to be told from those who would not.
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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.
What To Do If You Suspect Alzheimers Disease
Getting checked by your healthcare provider can help determine if the symptoms you are experiencing are related to Alzheimers disease, or a more treatable conditions such as a vitamin deficiency or a side effect from medication. Early and accurate diagnosis also provides opportunities for you and your family to consider financial planning, develop advance directives, enroll in clinical trials, and anticipate care needs.
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Reasons Why Some May Not Inform A Loved One About Their Diagnosis
Lets first look at reasons why a family member might not inform someone of their Alzheimers diagnosis.
- Knowing might set in motion a sense of hopelessness.
- Telling them might cause them emotional stress.
- Not knowing can prevent a person from feeling like a burden on family.
- Why bother? It may make no difference at all, you might think to yourself.
Tips For Everyday Care For People With Dementia
Early on in Alzheimers and related dementias, people experience changes in thinking, remembering, and reasoning in a way that affects daily life and activities. Eventually, people with these diseases will need more help with simple, everyday tasks. This may include bathing, grooming, and dressing. It may be upsetting to the person to need help with such personal activities. Here are a few tips to consider early on and as the disease progresses:
- Try to keep a routine, such as bathing, dressing, and eating at the same time each day.
- Help the person write down to-do lists, appointments, and events in a notebook or calendar.
- Plan activities that the person enjoys and try to do them at the same time each day.
- Consider a system or reminders for helping those who must take medications regularly.
- When dressing or bathing, allow the person to do as much as possible.
- Buy loose-fitting, comfortable, easy-to-use clothing, such as clothes with elastic waistbands, fabric fasteners, or large zipper pulls instead of shoelaces, buttons, or buckles.
- Use a sturdy shower chair to support a person who is unsteady and to prevent falls. You can buy shower chairs at drug stores and medical supply stores.
- Be gentle and respectful. Tell the person what you are going to do, step by step while you help them bathe or get dressed.
- Serve meals in a consistent, familiar place and give the person enough time to eat.
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Telling Family And Friends
An Alzheimer diagnosis doesnt only affect the person receiving it. The lives of family members and friends may also drastically change. When telling family and friends about a loved ones Alzheimers diagnosis, consider the following:
- Be honest with family and friends about the persons diagnosis. Explain that Alzheimers is a brain disease, not a psychological or emotional disorder.
- Invite family to support groups sponsored by your local Alzheimers Association.
- Realize that some people may drift out of your life, as they may feel uncomfortable around the person or may not want to help provide care.
- Tell family and friends how they can help you and your loved one. Give specific examples like picking up groceries or taking your loved one to appointments.
- Alzheimers disease can also impact children and teens. Just as with any family member, be honest about the persons diagnosis with the young people in your life. Encourage them to ask questions.
How Many Americans Have Alzheimers Disease
Estimates vary, but experts suggest that more than 6 million Americans age 65 and older may have Alzheimers. Many more under age 65 also have the disease. Unless Alzheimer’s can be effectively treated or prevented, the number of people with it will increase significantly if current population trends continue. This is because increasing age is the most important known risk factor for Alzheimers disease.
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Ethical Codes And Telling The Diagnosis
The psychiatrist should inform the patient of the nature of the condition, therapeutic procedures, including possible alternatives, and of the possible outcome. This information must be offered in a considerate way, and the patient must be given the opportunity to choose between appropriate and available methods.
But does this mean that psychiatrists have the duty to provide the information when there is no treatment? And how truthful should be the considerate way? Does it imply the whole truth? As much as the patient wants? As much as the patient’s physician believes is sufficient? The General Medical Council recommends that physicians, to establish and maintain trust in their relationships with patients, must give them the information they ask for or need about their condition, its treatment and prognosis… in a way they can understand. In practice, patients with dementia rarely ask for the information, and many physicians seem to think that because there is no cure to offer, such knowledge may be only detrimental and, therefore, not needed in therapeutic relationships. But can the relationships be successful without telling the truth?
Let The Children Know That The Disease Is Not Contagious
Many people who have had a conversation about dementia with teens and younger kids report that most minors will not want to associate with the person with dementia because they are afraid they might catch it.
In such a case, you must emphasize that dementia is not a type of flu or any other infection that affected people pass around.
Tell them that it is okay to spend time with their loved one who has dementia at close range and they will not get the disease from being around the person.
If they are young they might be sad thinking that they did something to cause the disease. Comfort them and reassure them time and again that they are not to blame for what is going on.
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Alzheimers Disease Vs Other Types Of Dementia
Dementia is an umbrella term for a range of conditions that involve a loss of cognitive functioning.
Alzheimers disease is the most common type of dementia. It involves plaques and tangles forming in the brain. Symptoms start gradually and are most likely to include a decline in cognitive function and language ability.
To receive a diagnosis of Alzheimers, a person will be experiencing memory loss, cognitive decline, or behavioral changes that are affecting their ability to function in their daily life.
Friends and family may notice the symptoms of dementia before the person themselves.
There is no single test for Alzheimers disease. If a doctor suspects the presence of the condition, they will ask the person and sometimes their family or caregivers about their symptoms, experiences, and medical history.
The doctor may also carry out the following tests:
- cognitive and memory tests, to assess the persons ability to think and remember
- neurological function tests, to test their balance, senses, and reflexes
- blood or urine tests
- a CT scan or MRI scan of the brain
- genetic testing
A number of assessment tools are available to assess cognitive function.
In some cases, genetic testing may be appropriate, as the symptoms of dementia can be related to an inherited condition such as Huntingtons disease.
Some forms of the APOE e4 gene are associated with a higher chance of developing Alzheimers disease.
Communicate At Eye Level With Limited Distractions
Looking down at someone can make them feel suspicious or anxious and can change the power dynamic, Hartford says. The aim is to level the playing field.
Were dealing typically with older adults who have changes in hearing, Hartford says. They may really rely on reading lips, talking face-to-face.
Also, limit distractions that people with dementia can have a hard time tuning out. A television, radio or air conditioning unit can be distracting. Get into a quiet space when you want to communicate.
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Our Most Frustrating Rational Thinking Losses
If Im experiencing dementia and you ask me to do something I cant do, Ill feel embarrassed, angry, hurt, or all three at once. Its essential that you understand what someone experiencing dementia is no longer able to comprehend for you to avoid getting combative, aggressive, and mean reactions.
Rational Thinking Loss #1Becoming unable to understand why.
Rational thinking skills are for understanding how, why, when, who and whatthe ability to perceive relationships between facts. Dementia takes that away. So if you try to explain to your loved one why they need to do something, or what went wrong, or how to do something, they will not be able to follow you and will end up embarrassed or concluding that youre making fun of them. Anger or hurt feelings will result. Whenever you catch yourself explaining why, stop. Youre asking them to do something they can no longer do. Youll have pleasanter interactions once you build new conversational habits and turn your focus away from why to talking about things that are pleasant.
Rational Thinking Loss #2Becoming unable to see cause and effect.
Rational Thinking Loss #3Becoming unable to follow sequences.
Rational Thinking Loss #4Becoming unable to prioritize.
Play To Their Strengths
Sometimes memory loss is so devastating that we all forget that there is a person still in there somewhere. Family members can be distraught by what’s missing and forget that there’s still a lot there within the person, and that they have strengths.
They still have long-term memory, so its up to the caregiver and/or family member to find them. It’s interesting that, medically, doctors do tests on other conditions but when it comes to memory loss, it’s often looked at like a switch: Either they got it, or they don’t. Just like everything else, there’s a progression of memory loss, and its up to the caregiver and/or family member to find out where the patient and/or loved one is, and bolster that.
Strength #1: Long-term memory & stories
Everyone has a short-term memory drawer and long-term memory drawer, and we put information in each. People with dementia and/or Alzheimers have a short-term memory drawer that has no bottom. He/she puts things in, and then they get lost. The long-term memory drawer, however, has a solid bottom. Lots of stories that are retrievable await . Encourage your patients and/or loved ones to tell you stories. You can even use photos to encourage stories. Photos are wonderful long-term memory reminders.
Strength #2: Humor & music
Strength #3: Spirituality
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