Changes In Behaviour Judgement And Moods
Becoming quiet, withdrawn or restless or frustrated or angry can be early signs of dementia. Someone may develop repetitive behaviour for example, they ask the same question over and over again, do the same thing repeatedly or make multiple phone calls to the same person. They may become insecure and anxious or start hiding and losing items. They may withdraw from social activities or give up hobbies and interests they have enjoyed.
They may show poor judgement, for example putting summer clothes on in cold winter months, not knowing when a kettle is full or overfilling cups when making cold and hot drinks, putting a kettle on the hob or leaving a cooker on or tap running. Someone with dementia may become very emotional and experience rapid mood swings or become quieter and less emotional than usual.
Should You Tell The Person They Have Alzheimer’s
Families may frequently ask, Should I tell the person that he/she has Alzheimer’s? Keep in mind that the patient and/or loved one can’t reason. They don’t have enough memory to remember the question, then think it through to form a conclusion. Caregivers and/or family members may often think if they tell the person with memory loss that he/she has Alzheimer’s, then he/she will understand and cooperate. You cant get cooperation by explaining that he/she has the disease and expect him/her to remember and use that information.
Dont Expect Them To Conform To Present
As strange as that may sound, learn how to enter into the patients/loved one’s world and not expect them to conform to our present day. As Diane Waugh, BSN, RN, CDP, says in the video above: When I had to deal with memory loss with my own mother, I found the hardest thing for me to do was to not try to drag her into my reality, but to go live where she was living, in her understanding.
Caregivers and/or family members should remember: give up expectations of the patient and/or loved one . Giving up expectations can make room for what the patient and/or loved one’s strengths are .
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Recognition And Coordination Difficulties
A person showing early signs of dementia may put everyday things in unusual places . They may have difficulty recognising familiar items such as a chair, soap, toothbrush, cutlery, kettle, coffee jar, cooker or fridge.
Signs of a loss of coordination skills can include struggling to undo or do up buttons, to tie or untie shoes and neckties, and to use a hair brush or razor. They may be more subtle, such as putting down a cup of tea too close to the edge of a table or having difficulties lifting a teapot or kettle or using a knife to cut vegetables or fruit.
How Do I Talk To Dad About His Diagnosis
Whatever you do, dont tell Dad about his Alzheimers disease.
Doctors hear this line often. The families who say it are afraid that the truth will devastate their loved one and lead to hopelessness and depression.
Some physicians may comply, but most believe its a patients right to be fully informed about his or her situation. Even patients living with dementia deserve to hear the truth. Plain, truthful talk allows everyone to come together, be supportive, give lots of loving help, and make a game plan for care, says Dr. Lakelyn Hogan, Home Instead gerontologist and caregiver advocate for Home Instead, an international in home care company that has helped thousands of families coping with Alzheimers disease.
Consider Margarets experience: Margarets family was so worried about her reaction to her Alzheimers diagnosis that they faxed the doctor and left frantic voice messages insisting he not tell Margaret anything. The doctor ignored their requests and laid it out fully for her. Her response? I knew it! Ive seen those ads on television about those memory pills!
Like many people, Margaret found it comforting to finally understand the truth about her memory loss. While families dread this moment, in many cases its almost a non-event for the person living with dementia. He or she may already know something is wrong. Others may be protected from the bad news by their forgetfulness, or not fully understand or retain the information.
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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
Common Frustrations & Difficulties
Communicating with a person with memory loss can be difficult, but the right strategies can bridge the gap and foster a more fulfilling relationship between the patient and/or loved one. For caregiverswhether you’re a professional or a family member caring for a loved oneits important to adopt a positive attitude to effectively communicate.
Engaging with patients and/or loved ones in an encouraging and patient manner will help minimize feelings of frustration. If you’re struggling to connect with a patient and/or loved one with memory loss, its important to know a few common frustrations and traps and how you can avoid them.
First, remind yourself that people with dementia and/or Alzheimers only have the present moment, so we can let them know that we enjoy their company. When caring for someone who has the disease, the most important thing to take care of is that persons feelings. A person with memory loss cant remember the minute before, they dont know whats going to happen in the next minute. They cant do that kind of thinking, so how they feel right now is the most important thing to pay attention to.
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Talk With Close Family Members Or Friends
Check in with others who know your loved one to see if theyve noticed any changes. Do this in a respectful, confidential manner to avoid unnecessary hurt or embarrassment.
When Alzheimers strikes, although many people become quite skilled at covering their memory lapses, they find it difficult to maintain that around those who know them well. Its often helpful to verify if others have made similar observations they may have been questioning the same thing and not have known whether to raise the concern or ignore it.
Of course, your objective here is not to spread a rumor or gossip, but rather to collaborate with those closest to your loved one.
Distraction: Singing & Reading
For some people, a distraction can be a good way to get the chore done. Its kind of a different communication style that helps in distressing situations. For example, if a patient and/or loved one likes singing, starting him/her singing could allow the caregiver and/or family member to ease into bathing time with a gesture.
Singing actually can help tremendously with memory loss patients and/or loved ones who can no longer talk, or have trouble finding words to form sentences, because they are usually still able to sing a song. Often, they can remember the lyrics of a song from beginning to end.
Many patients and/or loved ones can still read as well. Singing and reading can give the person great joy and hearing a loved ones voice can very comforting for family members.
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How To Tell The Patient
James McKillop , who has dementia, said: Being told of the diagnosis at the right time, in the right place, by the right person who has thoughtfully allowed plenty of time for explanations and any questions is essential. The right time can be difficult to establish, but a sooner-rather-than-later approach will give the person the opportunity to process the information and to begin considering care options while cognition allows.
The pace at which information is given may be more important. Some people may find it easier to deal with this on a step-by-step basis, while others will prefer to know everything as soon as possible so their future can be planned. This is likely to be difficult as the progression of the disease varies between individuals, and not everyone with a diagnosis of dementia is likely to experience all the same events as the illness progresses.
Professionals may be inclined to put pressure on patients to consider their prognosis while they are able to make informed decisions. The dilemma for the professional is that they need information from the person about their preferences for future care while they are cognitively able to provide it.
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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Dont Answer Questions Of Patient/loved Ones Regarding Bad Memories
People with Alzheimer’s often ask difficult questions, mostly about people who have passed away years ago. Its not helpful to remind the patient and/or loved one that a person theyre asking about has passed away. Rather than avoid the subject, you can say, He/shes not here right now, but tell me about him/her. Often the person with memory loss is looking for the sensation and security that they would have if their loved one was around.
Caregivers and/or family members should be helping patients and/or loved ones comfortable, safe, and protected. Elderly women, for example, who have had children commonly ask, Where are my babies? This question will often come up at meal time, when feeding the children was an important part of motherhood. Find a way to soothe their concern. You could say, The babies are sleeping.
As stated earlier, trying to bring a person with Alzheimer’s the present-day reality is not effective. Caregivers and/or family members should adapt to the patient and/or loved ones reality. Its ok to go anywhere in any time period in order to communicate.
Review These 10 Warning Signs Of Alzheimers
Note especially if the changes youre seeing are more sudden, which may indicate a delirium or other physical problem that may be reversed with treatment. Its critical that a physician evaluate your loved one as soon as possible in this situation.
If the symptoms have been developing more gradually over time, it is more likely that theyre related to dementia, such as Alzheimers disease.
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You May Have Problems With Abstract Thinking
“Are you, or the person you know, having problems understanding what numbers and symbols mean? From time to time, people may have difficulty with tasks that require abstract thinking, such as using a calculator or balancing a chequebook. However, someone living with dementia may have significant difficulties with such tasks because of a loss of understanding what numbers are and how they are used,” says the Alzheimer Society.
“Are you, or the person you know, putting things in places where they shouldn’t be?
Anyone can temporarily misplace a wallet or keys. However, a person living with dementia may put things in inappropriate places. For example, an iron in the freezer, or a wristwatch in the sugar bowl,” says the Alzheimer Society.
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.
The Case For Disclosure
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.
Tip : Pursue Activities That Bring You Meaning And Joy
Having Alzheimers or another dementia doesnt mean your life has to stop moving forward. By pursuing meaningful activities and relationships, you can continue to nourish your spirit and find pleasure and purpose in life.
Even when symptoms advance and certain activities become difficult, you can still find other ways to nurture and enrich your spirit. If you can no longer paint, for example, you may still be able to visit museums and appreciate the art of others. Or if you can no longer cook, you may still be able to devise the menu and help shop for ingredients.
While we all have different ways of experiencing meaning and joy, you may want to:
Pursue your favorite hobbies and interests. Engaging in activities that are important to you can help maintain your identity as well as enrich your life. Try taking a class or joining a club to keep your interest growing or to explore new activities.
Build your legacy. In the early stages of dementia, many people are mindful of how they want to be remembered. Maybe you want to pass on your skills and knowledge to others, or leave a record of your life for your grandchildren to enjoy. You might want to create photo albums, write your memoirs or a how-to book, share your favorite recipes, make a record of family traditions, or research your family history. Or perhaps you simply want to spend time with your closest loved ones to create new memories.
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Telling Someone You Are Concerned They May Have Dementia
Youve noticed that a friend or loved one is having some problems and you are worried they might have dementia. How do you voice your concerns and encourage them to seek help?
How do you tell a person if you think they might have dementia? Its not an easy conversation and its natural that the person may be defensive, angry or even in denial that anything is wrong. The most important thing is to try and see the situation from their point of view and also make sure that you dont appear to be critical or accusing them of anything. Here is the best way to let them know you have concerns:
Firstly, plan when you are going to have the conversation. Timing is key. Make sure its when youre both at your best, not when youre tired from a long day at work and not when they are most likely to be irritable. You will need to be patient and diplomatic and the person you are speaking to will need to be relaxed and feeling well.
Choose the right environment. Somewhere quiet and comfortable is key. Make sure you wont be interrupted turn off the TV and put your phone on silent. Rule out any distractions.
Decide in advance what you are going to say. Explain first that its important for you to have a conversation and why its a good thing to be able to talk to family members or loved ones when you are concerned about them.
Reassure them at every stage of the conversation. Let them know you are there to help and that you want to make sure they are OK.