How Can I Deal With My Diagnosis
You might feel a range of emotions after being diagnosed with dementia. Your feelings may also change over time as you process this information.
Common feelings include shock, denial, fear, anxiety, a sense of loss or isolation. Some people may feel a sense of relief at finally knowing what is causing their symptoms.
If you are diagnosed with dementia before the age of 65 , you may feel especially shocked. Many younger people do not expect a diagnosis of dementia. It may take you some time to come to terms with it.
Recognising your emotions can help you to process them. Talking about your feelings with your doctor, family and/or friends can also help.
Once you have taken some time to do this, you might like to learn more about dementia. This can be uncomfortable. But understanding what you might experience in the future can help you plan for it. This does not need to happen straight away. If you feel overwhelmed, take some time to absorb the new information.
Its a good idea to share your diagnosis with close family and friends. Emotional and practical support is important, especially as your dementia progresses. Having dementia can put extra strain on your relationships, since you may need more support.
Many people find that some relationships become stronger as time goes on, and you and your loved ones adjust.
Dementia Effects On Activities Of Daily Living
Claudia Chaves, MD, is board-certified in cerebrovascular disease and neurology with a subspecialty certification in vascular neurology.
Activities of Daily Living are tasks that need to be accomplished on a regular basis to function. Examples of ADLs include bathing, dressing, grooming, eating, mouth care and toileting.
What Are The Signs That Someone With Dementia Is Dying
It is difficult to know when a person with dementia is coming to the end of their life. However, there are some symptoms that may indicate the person is at the end of their life including:
- limited speech
- needing help with everyday activities
- eating less and swallowing difficulties
- incontinence and becoming bed bound.
When these are combined with frailty, recurrent infections and/or pressure ulcers, the person is likely to be nearing the end of their life. If the person has another life limiting condition , their condition is likely to worsen in a more predictable way.
When a person gets to within a few days or hours of dying, further changes are common. These include:
- deteriorating more quickly
- irregular breathing
- cold hands and feet.
These are part of the dying process, and its important to be aware of them so that you can help family and friends understand what is happening.
When a person with dementia is at the end of life its important to support the person to be as comfortable as possible until they die
For more information, see our page, Signs that someone is in their last days or hours.
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How Can Family Members Help Dementia Patients With Everyday Living Activities
It can be difficult to know how to help those living with the effects of dementia. We all want our loved ones to have as much independence as possible in later life. But dementia effects can make this more challenging. It is important to stay calm and take things slowly. Remember that the condition is affecting your loved ones brain and is creating changes that they cannot control. Be patient and understanding, and try to see things from their point of view as much as possible. For example, if your mother or grandmother is wandering around aimlessly, try to consider that they may be looking for something because it wasnt in the right place originally. Use humour appropriately and try to make light of a situation. Laughter is, after all, great medicine.
How Can I Support Someone With Dementia Towards The End Of Life
Knowing the person will make it easier to provide person-centred care that is focused on what they need and want. It can help to know about their likes, dislikes and their wishes for how they want to be cared for. If the person isnt able to tell you about themselves, speak to their family, friends or other people who know them well.
Its a good idea to find out if the person has a copy of This is me , a document that records information about themselves. If you cant speak to the person, ask those close to them if they have a copy. They may have these details recorded in their care plan.
There are many ways to support someone with dementia at the end of life.
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Tips For Common Behavior And Mood Changes
Aggressive & Threatening Behavior
Sometimes things can get out of control and feel very scary. These are tips and strategies for dealing with especially challenging behaviors. If you think that you or others may be in immediate danger, call 911.
THEN
The person with dementia is threatening you or acting physically violent, such as hitting, pushing, or kicking you
- Give the person space and time to calm down.
- Stay out of arms reach and position yourself near the exit.
- Avoid small spaces like kitchens, bathrooms and cars.
- Remove or secure objects that could be used as weapons.
- Reduce background noise .
- Keep a phone with you in case you need to call for help.
- Go outside, to a neighbors house, or public place if needed to stay safe.
- Take a deep breath and try to stay calm.
- Listen.
- Empathize/apologize: I am sorry this is so frustrating.
- Offer reassurance: I know this is difficult. It is going to be okay, or I am here to help.
- Give yourself a break take time to care for your own needs.
- Get help .
- Tell the dispatcher your name and location and that your family member has dementia. Tell the dispatcher if a weapon is involved.
The person with dementia is angry and accusing you of something that is not true, such as stealing from or cheating on them
The person with dementia is throwing fits or having emotional outbursts, such as yelling, screaming, or banging on things
Anxiety Related to Dementia
THEN
Apathy
How To Communicate If You Have Dementia
Tell those close to you what you find hard and how they can help you.
For example, you may find it helpful if people calmly remind you:
- what you were talking about
- what someone’s name is
Other things that can help include:
- making eye contact with the person you’re speaking with
- turning off distractions like radio or TV
- asking people to talk more slowly and repeat what they have said if you don’t understand it
- asking people not to remind you that you repeat things
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Can I Still Do Hobbies With Dementia
Staying involved in activities you enjoy will help you live well with dementia.
Many people with dementia continue to do hobbies that they enjoy, with some changes and support. You can ask your friends and family to help you keep doing activities you enjoy.
Try and be patient with yourself. Choose simple, accessible activities for best enjoyment.
Here are some activities you may enjoy:
- walking with others and/or pets
- looking after pets
- looking through old photos or memorabilia and sharing them with others
How Your Relationships May Change
As the symptoms of dementia worsen over time, it’s likely that you’ll need extra help and support.
If you have been used to managing your own or the family’s financial and social affairs, this can be hard to accept.
It can also be difficult for the person who now has to help you, as the balance of your relationship with them will change.
Other ways your relationships may change include:
- you may become more irritable and less patient those close to you may find this hard to cope with
- you may start to forget people’s names this can be frustrating for both you and others
- your partner or adult child may become your carer this can be hard for you both to accept, as you once were able to care for them
- sex and intimacy you may become more or less interested in sex
It’s important to talk about your feelings and frustrations. It’s also important to keep in contact with family and friends.
And try to make new friendships through local activities and support groups.
Find out more from Alzheimer’s Society on how your relationships may change.
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Find Out More About The Diseases That Cause Dementia
Our about dementia information pages are a good place to start to find out more. You can get an overview of the different diseases that cause dementia, more information about the symptoms associated with these diseases and treatments that are currently available.
If you have further questions about dementia or want to know more about dementia research and how you and your loved ones can get involved, our Dementia Research Infoline can help. Call us on 0300 111 5 111 or email us at
How Can Dementia Affect Physical Health
Most people do not realize the physical impact that dementia has on the human body. As any experienced dementia caregiver can tell you, the more your loved ones dementia progresses, the more their physical health will decline. Familiarizing yourself with what to expect can help you prepare for the future.
Here are 5 ways dementia can affect physical health:
1. Jerky movements. It is common for individuals in the later stages of dementia to move in a jerky manner. This is particularly true with patients suffering from Alzheimers disease. Doctors are unsure why this happens.
2. Loss of appetite. Dementia patients often become quite picky about the types of food they eat. It is not uncommon for a person with advanced dementia to forget how to use utensils or how to chew or swallow.
3. Difficulty swallowing. The act of swallowing is surprisingly complicated, and it is not unheard for a person with dementia to forget how to swallow. This puts patients at a risk for dehydration. If a patient with dementia becomes dehydrated, it will only worsen their other physical symptoms, like the jerky movements.
4. Difficulties using the bathroom. Unfortunately, one of the more debilitating physical effects of dementia is losing control of ones bowels. Incontinence is one of the primary indicators that this has happened. For example, aides who work in dementia home care will often encourage their charges to go to the bathroom every 1-2 hours.
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Dementia Care: How Penny Garners Specal Method Promotes Wellbeing
Penny Garners observations of her mother and the way she processed and linked information become the basis for the development of the SPECAL method a person-centered method of managing dementia and promoting wellbeing. Today, she trains and raises awareness about the method through the Contented Dementia Trust and the Sunday Times bestselling book Contented Dementia. We talk to her about her unique work
Where To Get Help
- Your local community health centre
- National Dementia Helpline Alzheimers Australia Tel. 1800 100 500
- Aged Care Assessment Services Tel. 1300 135 090
- My aged care 1800 200 422Cognitive Dementia and Memory Service clinics Tel. 1300 135 090
- Carers Victoria Tel. 1800 242 636
- Commonwealth Respite and Carelink Centres Tel 1800 052 222
- Dementia Behaviour Management Advisory Service Tel. 1800 699 799 for 24-hour telephone advice for carers and care workers
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Keep Family Members Informed
This can be done in different ways. You can call and talk to people individually or you can write a family newsletter. Copy the letter and send it to different members of the family so you donât have to rewrite the same information to each one. Just remember, if you keep the lines of communication with your family and friends open, they will be able to understand more easily what you and your family member are going through. The better they understand, the more willing theyâll be to pitch in and help.
Caregiving isnât easy, and itâs important to make sure your aging family member does not take up all your energy. Make sure you find ways to pull together as a family and work together for everyoneâs benefit.
How Psychologists Can Help
Although dementia mainly affects older people, it is not a normal part of aging. Dementia is a syndrome caused by a variety of brain illnesses that affect memory, thinking, behavior and the ability to perform everyday activities.1 Alzheimers disease is the most common type of dementia, accounting for 60 to 80 percent of cases, and nearly one in every five dollars spent by Medicare is on people with Alzheimers or another dementia.2
New research suggests that people are often correct when they think their memory is declining. Individuals may pick up on subtle signs before they are obvious to others. Normal memory problems do not affect everyday life. If someone forgets where they put their keys, it may be because that individual is not well organized. However, if someone forgets what keys are used for or how to unlock doors, it may be a more serious matter.3
A diagnosis of dementia can be emotionally overwhelming for the individual as well as the family. Individuals with dementia require more intensive care and assistance as the dementia worsens. Though there may not be a way to completely alleviate symptoms of dementia, maintaining sleep patterns, a healthy diet, regular exercise, cognitive stimulation and socialization can help people with dementia maintain a normal level of functioning for as long as possible.
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What Is Dementia And What Makes It So Complex
Dementia describes groups of specific diseases characterized by symptoms such as memory loss. The most common type of dementia is Alzheimers disease . People with AD have plaques in their brains made of up of tangled proteins, and many researchers have hypothesized that these plaques are the cause of the disease.
Another common type of dementia is vascular dementia. This is thought to be induced by damaged blood vessels in the brain, such as from a stroke.
Experts believe both genetic factors and modifiable lifestyle factors all play a role in the development of dementia, perhaps in concert.
The Effect Of Dementia On The Emotions
Dementia can have an impact on how people experience and handle their emotions, and read them in others.
I cry quite a lot now. I never used to. I can’t keep it in.
My mood or sense of happiness or motivation all varies it’s natural for them to vary. Sometimes I wake up and I’m fed up and I don’t want to do anything but sit in the corner and cry . Later on I find something I can do physically and I feel better.
I’m more sensitive. Sometimes you can have a joke with me, then next day it’s not funny.
One thing that has got better since my diagnosis is that I pick up on people’s feelings much, much better than I did before.
For more on these ideas, go to Understanding dementia in the section on Communicating well.
The emotional impact of having and living with dementia is often overlooked.
This can mean that perfectly valid emotional responses to difficulties and challenges can be disregarded and put down to ‘the dementia’. In doing this, we may ignore underlying issues in favour of attempting to control what might be seen as ‘challenging behaviour’.
I think it’s important that people realise that it is hard living with dementia there’s a big emotional impact.
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Dont Forget The Children And Teens
With so much focus on the person who has dementia, sometimes younger family members donât get the attention they need, or the illness is not explained in a way they can understand.
Children often experience a wide range of emotions when a parent or grandparent has Alzheimerâs disease. Younger children may be fearful that they will get the disease or that they did something to cause it. Teenagers may become resentful if they must take on more responsibilities or feel embarrassed that their parent or grandparent is âdifferent.â College-bound children may be reluctant to leave home.
Reassure young children that they cannot âcatchâ the disease from you. Be straightforward about personality and behaviour changes. For example, the person with Alzheimerâs may forget things, such as their names, and say and do things that may embarrass them. Assure them that this is not their fault or intentional, but a result of the disease.
Find out what their emotional needs are and find ways to support them, such as meeting with a counsellor who specializes in children with a family member diagnosed with Alzheimerâs disease. School social workers and teachers can be notified about what the children may be experiencing and be given information about the disease. Encourage children and teens to attend support group meetings, and include them in counselling sessions.
Here are some examples that might help you cope with role changes within the family:
My Life Is Changing Because Of Dementia
Getting a diagnosis of dementia is a life-changing event.
People respond in a variety of ways, as Ken says:
Different people have different experiences of diagnosis and therefore different ways of coping afterwards.
Feelings of denial, anger, loss, despair and grief are common responses, as they are to diagnoses of any serious illness.
The first time they said, ‘You’ve got Alzheimer’s disease’, it was a hell of a shock. When they said, ‘There’s no cure’, I defy anyone to say that’s not a shock.
No one has asked me about my feelings… ‘Are you feeling frightened?’ We need emotional counsellors, there need to be tests for emotional wellbeing alongside blood pressure etc.
One thing that makes a diagnosis of dementia different from other illnesses is that it is often made worse by the amount of stigma and negativity that surrounds it.
I couldn’t take it in at first. I thought there must have been a mistake, and, ‘Why me?’ It took me a while to accept it. I was very bitter. It was like everything I had worked for had been taken away from me.
Some people find getting a diagnosis is a relief, often after a struggle to reach a diagnosis:
Well you know for me it was a big relief knowing that I could give it a name.
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