Make Sure Your Loved One Knows You Have A Plan To Help
Reassure your mother or father that there are many things you can do together to help them live their best possible life. This includes education. Together you can find the right medical care, look into local support organizations, and plan ahead for legal and medical needs. Discuss how to create a safe home environment, especially if your loved one lives alone.
Dont sugarcoat the diagnosis, but dont push the panic button either. Tell your loved one that the two of you will create a plan together.
What To Say When You Think Your Loved One Might Have Dementia
Now that youve done some research and possibly compared notes with a healthcare professional, its time to sit down and have a calm, candid chat. Some experts suggest that a good way to begin is to just be honest. Share that you have noticed that they cant seem to remember things all that well. Ask if they have been feeling stressed or had trouble sleeping. Then wonder aloud if it might be a good idea to see a doctor and get to the bottom of things.
The approach lets you share your concerns without using the D word. It also shows respect for your loved one by asking them what they think.
Some people will be open to the idea of consulting with their primary care doctor. However, depending on your mom or dads personality, and how advanced their condition is, its not unusual to encounter resistance. Although they may be resistant, there are still ways to help a parent with dementia who refuses care.
Like you, they might be scared. Or it could be that the condition is affecting their ability to think things through. Whatever the reason, continue to display empathy and understanding.
One more thought: Dont jump to any conclusions. While it might well be dementia, it could be something else. Changes in memory, mood, and behavior can be the result of other physical conditions, reactions to medication, nutritional issues, hormonal fluctuations and a host of other reasons.
‘your Brother Died 10 Years Ago’
A person living with dementia may forget about a past bereavement or ask for somebody who has passed away. But reminding them of a loved one’s death can be painful, even causing them to relive the grief they’ve already experienced. How carers should respond to this may vary for different circumstances, but it’s always good to show sensitivity.
Try this instead:
It may be better to come up with another reason for somebody’s absence, while at other times a gentle reminder is appropriate. In the later stages of dementia, trying to remind them that the person has died is unlikely to work and may be best avoided.
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Put Present And Past Together To Understand The Other Persons Reality
The more that you know about the key stories, people and themes of a persons life the better you become at interpreting meaning. If you are puzzled by a response, think about what the person has just been experiencing before your conversation, and think about what you know about the persons past and see if you can make a connection.
What Doctors Need To Do To Diagnose Dementia
Now that we reviewed the five key features of dementia, lets talk about how I or another doctor might go about checking for these.
Basically, for each feature, the doctor needs to evaluate, and document what she finds.
1. Difficulty with mental functions. To evaluate this, its best to combine an office-based cognitive test with documentation of real-world problems, as reported by the patient and by knowledgeable observers
For cognitive testing, I generally use the Mini-Cog, or the MOCA. The MOCA provides more information but it takes more time, and many seniors are either unwilling or unable to go through the whole test.
Completing office-based tests is important because its a standardized way to document cognitive abilities. But the results dont tell the doctor much about whats going on in the persons actual life.
So I always ask patients to tell me if theyve noticed any trouble with memory or thinking. I also try to get information from family members about any of the eight behaviors that are common in Alzheimers. Lastly, I make note of whether there seem to be any problems managing activities of daily living and instrumental activities of daily living .
Driving and managing finances require a lot of mental coordination, so as dementia develops, these are often the life tasks that people struggle with first.
Checking for many of these causes of cognitive impairment requires laboratory testing, and sometimes additional evaluation.
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When To Seek Medical Attention
Even for people without the disease, it is not easy to tell whether a person has dementia or not, the reason a doctors intervention is necessary.
It is because in most cases, dementia is only diagnosed when the symptoms start showing up and for some individuals, the disease may have progressed considerably.
This is one of the things that also makes it difficult to give a straight answer to the question do people with dementia know they have it.
There are some early warning signs, however, that may point towards a person having dementia.
Some of the most common ones include:
- Confusion
Get A Carer’s Assessment
If you care for someone, you can have an assessment to see what might help make your life easier. This is called a carer’s assessment.
A carer’s assessment might recommend things like:
- someone to take over caring so you can take a break
- training in how to lift safely
- help with housework and shopping
- putting you in touch with local support groups so you have people to talk to
A carer’s assessment is free and anyone over 18 can ask for one.
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Planning For The Future
The way the patient is involved in future planning will depend on factors such as their experience, cognitive function and the skill of the professional involved. There can be little doubt that, for patients who can continue to verbally comment on their wishes, the process will be easier.
A balance needs to be struck between what the person feels is important and what we know from experience is likely to require consideration. This might include what to do when capacity is challenged, how to manage financial affairs, and when and how to relinquish independence.
Advance directives – One of the most accessible ways to begin to consider and document treatment and care choices for the future is through use of a living will or advance directive. The Alzheimers Society describes an advance directive as a means for a person to give consent on certain treatment or care, refuse certain treatments or to nominate someone to do so on their behalf. It does not give an individual the right to refuse basic care or ask a doctor to do something unlawful.
Family or carers need to be made aware of advance directives and understand their implications. This will enable them to advocate in the future from a basis of knowledge of what the individual making the directive thought at the time.
Keeping The Conversation Going
Dr Jennifer Bute, who has dementia, talks about the importance of patterns in speech and conversations. She says: If one can catch a flavour or hint of what the person is talking about, and can latch on to that, often the person can pick up on the pattern .
Dr Bute who was a GP before she was diagnosed with early onset Alzheimers disease and whose father had dementia talks about speech and questions in an educational video on her website.
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What Not To Say After A Dementia Diagnosis
Conversational techniques we take for granted can be inappropriate when communicating with someone with dementia. Here are some donts and dos for that first day and every day after:
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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‘i’ve Just Told You That’
Having to answer the same question several times can be frustrating, but repetition will happen. There is little benefit to passing on your frustration to somebody with dementia, and saying Ive just told you that only reminds the person of their condition.
Try this instead:
Try to be polite and as patient as possible. It’s important for somebody with dementia to feel they’re being listened to and understood.
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?
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My Experience With Dementia And Grief
My struggle with this dilemma began when my father started receiving hospice care. At this point in my caregiving journey, both my parents had dementia and shared a room in a nursing home. For many years, they had lived in their own private rooms on the same floor, but the end was near for both of them. We felt they needed to be together during this time, and their money was nearly gone from the expense of two nursing home rooms.
At first, I did not want Mom to know that Dad was going on hospice care since I knew shed immediately think death. This correlation is what most people focus on, even though hospice services are a blessing for ailing loved ones and their families. However, I knew this news would be traumatic for Mom, who was already suffering from a great deal of physical pain and the effects of dementia. I wanted to spare her even more anguish.
The hospice staff kindly but firmly rejected my plan. Their chaplain handled informing Mom of the change to Dads care plan, and she was included in the services they offered. Of course, they were right to do this. It was painful for everyone involved, but these wonderful people walked us through each step.
I continued to talk Mom through it daily, since she kept forgetting that Dad was on hospice. Eventually, though, it did not matter. She just couldnt retain the information. Fortunately, she didnt dwell on the connotation with death, and she loved the extra attention she and Dad received from the hospice care team.
Stage : Moderately Severe Dementia
When the patient begins to forget the names of their children, spouse, or primary caregivers, they are most likely entering stage 6 of dementia and will need full time care. In the sixth stage, patients are generally unaware of their surroundings, cannot recall recent events, and have skewed memories of their personal past. Caregivers and loved ones should watch for:
- Delusional behavior
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Dont Counter Aggressive Behavior
People with dementia and/or Alzheimer’s may become aggressive in response to the environment. Bath time is often when the aggressive behavior is displayed. The caregivers and/or family member’s approach may also play a part. Rushing, speaking harshly, or forcing a person may result in an aggressive response. When someone with memory loss displays aggressive behavior, it is a form of communication. It may be the only way a person has left to say, Pay attention to me! I don’t want to take a bath! When someone is communicating vigorously, it is the caregivers and/or family member’s job to respect that communication. Hitting, kicking, or biting are ways of saying, stop. The appropriate response is to stop. That doesnt mean not to try again in five minutes or a half an hour.
How To Deal With Dementia Behavior Problems
- How to Deal with Dementia Behavior Problems: 19 Dos and Donts
Dementia is a disease that affects millions of people across the globe every year. It is often a highly misunderstood condition that is marred by numerous misconceptions, which make the condition difficult to understand and study.
You should know that dementia is not a name for an illness, rather it is a collective term that describes a broad range of symptoms that relate to declining of thinking, memory, and cognitive skills. These symptoms have deteriorating effects that usually affect how a patient acts and engages in the day-to-day activities.
In advanced dementia stages, affected persons may experience symptoms that bring out a decline in rational thought, intellect, social skills, memory, and normal emotional reactivity. It is something that can make them powerless when it comes to living normal, healthy lives.
Relatives, caregivers, spouses, siblings, children and anyone close to a person who has dementia need to know how to deal with behavioral problems that surface because of the illness. Examples of dementia problems may include aggressiveness, violence and oppositional behaviors. Find out some of the vital Do and Donts when dealing with a dementia patient.
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Working When You Have Dementia
If you’ve received a dementia diagnosis, you may be worried about how you’ll cope at work. You should speak to your employer as soon as you feel ready.
In some jobs, such as the armed forces, you must tell your employer. If you’re unsure, check your employment contract.
You can also get advice from the disability employment adviser at your local Jobcentre Plus, your trade union or your local Citizens Advice service. If you decide to leave work, seek advice about your pensions and benefits.
If you want to continue to work, speak to your employer about what adjustments can be made to help you, such as:
- changes to your working hours
- scheduling meetings at different times
- changing to a different role that may be less demanding
Under the Equality Act 2010, your employer has to make “reasonable adjustments” in the workplace to help you do your job.
Find out more about working and dementia from Alzheimers Society
Do Not Try And Alter Undesirable Behavior
Lack of understanding may push one to try and change or stop any undesirable behavior from patients who have dementia. Keep in mind that it is almost impossible to teach new skills or even reason with the patient. Try instead to decrease frequency or intensity of the behavior. For instance, respond to emotion and not the changes in behavior. If a patient insists on always asking about a particular family member reassure them that he or she is safe and healthy as a way of keeping them calm and happy.
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Things Not To Say To Someone Living With Dementia
It can be difficult to know what to say to someone diagnosed with dementia. Often they dont disclose their diagnosis in the early years so you can tell at times that something is not quite right. You dont know why they are different to how you have always known them and you dont want to guess or ask for fear of being wrong and offending your relative or friend. Likewise, if you have a friend who has been diagnosed with dementia it can be difficult to know what to say and how best to support them.
Dementia can affect an individual in various ways, depending what caused the dementia, what state of health the individual was in prior to the onset of the condition and how their brain is uniquely affected.
The author of this list, 20 Things Not to Say to Someone with Dementia, Kate Swaffer is living with dementia and makes some great points here.Kate has asked us to include the following when sharing her 20 point list.
If it is possible to positively impact the life of even one more person living with dementia, then it would not matter how many people without dementia disagreed with me.
Kate Swaffer recently wrote:
The development of this list has sometimes been taken the wrong way by family care partners. It was not written to upset or criticise care partners but to help them understand that a few changes to the way they are, when around people with dementia, might improve our experience of dementia and therefore make their job easier.
2. Dont tell us we are wrong.