Individuals With Dementia Who Speak Out
Dr Richard Taylor was diagnosed with Alzheimers disease in the mid-1990s when he was 58 years old. Dr Taylor has his own website, produces a newsletter and speaks at dementia conferences throughout the world. He now says that, thinking, speaking, and writing about what it is like for me to live with this condition has become the purpose of my life.
Another important figure is Christine Bryden, an Australian woman who was diagnosed in 1995 at the age of 46. She has written two books about her experiences and speaks at major conferences throughout the world. Visit Christin Bryden’s website.
Dr Daphne Wallace, a retired old-age psychiatrist, was diagnosed with early vascular dementia in 2005. She is currently co-chair of the National Dementia Strategy for England Implementation Reference Group and an extremely active member of the Alzheimers Society.
Obviously not every younger person will want to get involved in public life to this extent. It is perfectly natural for some individuals to want a quieter, more private life, which should be respected. The issue is not to assume a person cannot or would not want to be active in their local community just because they have dementia.
Encourage Them To See Their Doctor
If youve noticed that someone close to you is showing symptoms of dementia, its important to encourage them to see their doctor to talk through whats been going on.
Talking to someone about changes youve noticed in them can be difficult. It can help to have the conversation in a space where both of you are comfortable, are able to hear each other clearly and speak freely. Health Direct recommends starting the conversation by talking about what youve noticed and the other common reasons this might be happening. For example, you might say youve noticed the person has had trouble with their memory recently, and ask if theyve been stressed or not sleeping well. Then you can suggest that its time to see a doctor to find out whats happening.
If you dont have a close relationship with the person, you might talk to someone who knows them well about what youve noticed, see if theyve noticed the same things and ask them to bring it up with the person.
If a person remains resistant to following up about changes in their memory or behaviour, Dementia Australia recommends finding a different, physical reason to encourage the person to see the doctor, like an overall physical check-up, a blood pressure test or diabetes check. You can see more suggestions on what to do if the person you are concerned about does not want to see their doctor on the Dementia Australia website.
What Is The Clock Test For Dementia
The clock test is a non-verbal screening tool that may be used as part of the assessment for dementia, Alzheimers, and other neurological problems. The clock test screens for cognitive impairment. The individual being screened is asked to draw a clock with the hour and minute hands pointing to a specific time. Research has shown that six potential errors in the clock testthe wrong time, no hands, missing numbers, number substitutions, repetition, and refusalcould be indicative of dementia.
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Do Try And Identify The Trigger That Causes Behavior Change
After spending some time with a patient who has dementia, caregivers may be in a position to identify some of the things that make dementia sufferers yell, get physical, or change their mood. For some, it may be something simple such as taking a bath or even getting dressed.
The best approach to handle this is not to force the patient to do something that they do not want to do. Try and distract them with something else that allows them to relax and calm down. Once they are not a danger to themselves or anyone around them, try going back to the subject, but this time reassuringly and calmly.
Talking To Others About Your Diagnosis
While support from family and friends is crucial, choosing who to tell about your diagnosis is always a very personal decision. You may want to share it with just your closest family first, for example, then with a wider group of friends and acquaintances later. Whatever you decide is right for you, its important not to try to go it alone and deny people who care about you the chance to provide support.
Its also important to be prepared for a broad spectrum of reactions. Just as you may have felt a combination of shock, anger, grief, and despair at news of your diagnosis, people close to you may have similar reactions. Remember: you dont have to cover everything all at once. Your first conversation with loved ones is likely to be just the start of an ongoing dialogue as you all learn more about the disease and the challenges youll be facing in the future.
You may find that one of the hardest things about being diagnosed with dementia is the impact it can have on your relationships. As your independence declines, you may become more reliant on your spouse, children, or friends. You may lose your role as provider, financial decision-maker, or designated driver as others take over those responsibilities. Some older friends may even pull away, your diagnosis raising uncomfortable questions about their own health.
When communicating with loved ones:
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What Diagnosis Falls Under Alzheimer’s Disease
Alzheimers disease is a diagnosis in itself. When it is noticeable clinically and identified early on, the formal diagnosis may be Mild Cognitive Impairment due to Alzheimers disease which may later develop into a diagnosis of dementia due to Alzheimers disease.
Stage : Moderate Dementia
Patients in stage 5 need some assistance in order to carry out their daily lives. The main sign for stage 5 dementia is the inability to remember major details such as the name of a close family member or a home address. Patients may become disoriented about the time and place, have trouble making decisions, and forget basic information about themselves, such as a telephone number or address.
While moderate dementia can interfere with basic functioning, patients at this stage do not need assistance with basic functions such as using the bathroom or eating. Patients also still have the ability to remember their own names and generally the names of spouses and children.
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Common Causes Of Sleep Problems In Dementia Patients
Troubled sleep is thought to be a dementia risk factor as well as a behavioral symptom. Here are some factors that may contribute to your loved ones sleep problems:
- Brain changes. Dementia patients have steeper changes in their brains sleep architecture and their circadian rhythms, causing sleep disturbances.
- Over-the-counter medications. Some over-the-counter medications labeled PM can disrupt sleep by making patients sleep for a bit but then making them more confused or sleepy at the wrong time, Hashmi says.
- Diet. Caffeine, excess sugar , and alcohol can disrupt sleep patterns, Hashmi says.
- Electronic screens. The blue light from a computer, portable electronic devices, and television screens can delay sleep and disturb sleep patterns, Hashmi says.
Who Is Early Onset Dementia Care For
Treating early onset dementia as soon as possible is of utmost importance to those who have been diagnosed.
As its name implies, early onset dementia care is primarily intended for younger individuals that are beginning to show preliminary signs of the condition.
Much like other forms of dementia, there is currently no known cure for early onset dementia. Some conditions like frontotemporal dementia are more common in younger people, but anyone living with dementia is prone to various other types of the condition.
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Where To Get Help
- Your local community health centre
- National Dementia Helpline Dementia Australia Tel. 1800 100 500
- Aged Care Assessment Services Tel. 1300 135 090
- My Aged Care 1800 200 422
- Cognitive Dementia and Memory Service clinics Tel. 1300 135 090
- Carers Victoria Tel. 1800 242 636
- Commonwealth Carelink and Respite Centres Australian Government Tel. 1800 052 222
- Dementia Behaviour Management Advisory Service Tel. 1800 699 799 for 24-hour telephone advice for carers and care workers
Dont Neglect Your Own Needs
By always focusing so diligently on your loved ones needs throughout the progression of their dementia, its easy to fall into the trap of neglecting your own welfare. If youre not getting the physical and emotional support you need, you wont be able to provide the best level of care, and youre more likely to become overwhelmed and suffer burnout.
Plan for your own care. Visit your doctor for regular checkups and pay attention to the signs and symptoms of excessive stress. Its easy to abandon the people and activities you love when youre mired in caregiving, but you risk your health and peace of mind by doing so. Take time away from caregiving to maintain friendships, social contacts, and professional networks, and pursue the hobbies and interests that bring you joy.
Caregiver support
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Common Causes Of Dementia
Medical intervention for dementia or dementia-like symptoms depends on the source of the problem. Although its widely believed that such conditions solely affect the elderly, thats inaccurate.
People of any age can experience these symptoms because the causes are related to a variety of health conditionsfrom traumatic brain injury to Alzheimers disease.
Dont Just Talk Loudly
Not every person with dementia has a hearing impairment, and using a loud tone can make them feel like you are yelling at them. Use a clear, normal tone of voice to start a conversation with someone.
If the person doesnt respond or you become aware that they have a hearing problem, you can increase your volume. Speaking in a slightly lower register can also help if someone has a hearing problem.
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Navigating Some Common Challenges Of Early Onset Dementia
As difficult as these changes can be for everyone involved, there are action points caregivers can take to help your loved one make these transitions:
Employment
- Plan for the future. As the disease progresses, your family should form a plan that outlines when an employer should be told about the disease, and at what point your loved one should no longer work.
- Make adjustments. Examine how your loved one could make adjustments so that he or she may continue to work as long as possible. This might include moving to a less stressful or difficult position, reducing work hours or working from home. These and other options will help to maintain the familys income and boost your loved ones self-esteem.
- Explore other options. Consider early retirement, as well as ways to access all benefits available through your loved ones employer. The employer may have disability provisions in existing pensions and insurance plans.
Financial and legal matters
- Plan ahead for financial needs. Meet with a financial counselor who can help you investigate insurance, investments and other financial options.
- Get your documents in order. Organize all of your financial and legal documents, as well as other important information in one place, and make sure the necessary family members know where to find them.
- Explore financial assistance options. Because dementia is a disabling illness, your loved one may qualify for disability assistance from some government programs.
Campaigning For A Better Deal
Without something meaningful and challenging to do in life, a persons health and wellbeing are likely to deteriorate more quickly. Many people with dementia including younger people with dementia are finding a valuable role in campaigning for a better deal for people with dementia from society and from the services they receive or may one day receive. Dementia campaigning organisations can give people a real sense of achievement and purpose in life.
The Scottish Dementia Working Group is one example. James McKillop set up the SDWG in 2002 after he was told he could not attend a dementia conference, even though he had dementia. He thought a campaign group might change that and raise awareness of the social exclusion that people affected by this condition often face. Now, the SDWG has over 100 members, all of whom have a diagnosis of dementia.
The SDWG seeks to influence policies and attitudes about dementia. The group employ a paid support worker to assist the smooth running of the group, which is based in Glasgow and has strong links with Alzheimer Scotland. The group is extremely active and members meet regularly. The group continues to evolve. It has produced DVDs to raise awareness among health professionals and the general public , a joke book, a website and an annual newsletter. A core group of members regularly speak at national and international conferences.
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Cope With Changes In Communication
As your loved ones Alzheimers or dementia progresses, youll notice changes in how they communicate. They may have trouble finding words, substitute one word for another, repeat the same things over and over, or become easily confused. Increased hand gestures, losing their train of thought, and even inappropriate outbursts are all common as well.
Even if your loved one has trouble maintaining a conversationor less interest in starting oneits important to encourage social interaction. Making them feel safe rather than stressed will make communication easier, so try to manage your own frustration levels.
Be patient. If your loved one has difficulty recalling a word, for example, allow them time. Getting anxious or impatient will only inhibit their recall. Gently supply the word or tell the person that you can come back to it later.
Be aware of your body language. Your loved one responds to your facial expression, tone of voice, and nonverbal cues as much as the words you choose. Make eye contact, stay calm, and keep a relaxed, open posture.
Speak slowly and clearly. Give one direction or ask one question at a time, use short sentences, and give your loved one more time to process whats being said. Find a simpler way to say the same thing if it wasnt understood the first time.
Maintain respect. Dont use patronizing language, baby talk, or sarcasm. It can cause hurt or confusion.
Be Aware Of The Signs Of Dementia
Although dementia is not only about memory loss, that’s one of the main signs.
Some of the other signs of dementia include:
- increasing difficulty with tasks and activities that require concentration and planning
- changes in personality and mood
- periods of mental confusion
- difficulty finding the right words or not being able to understand conversations as easily
You may like to suggest you go with your friend or relative to see a GP so you can support them. You’ll also be able to help them recall what has been discussed.
A GP will ask how the symptoms have developed over time. They may also do a memory test and physical examination. Blood tests may be done to check if the symptoms are being caused by another condition.
If other causes can be ruled out, the GP will usually refer your friend or relative to a memory clinic, or other specialist service, where they may have more assessments to confirm whether they have dementia.
Read more about how dementia is diagnosed.
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Monday 17 September 2018
Dementia is the term given to a group of diseases that affect a persons thinking, behaviour and ability to perform everyday tasks. While its commonly thought of as an older persons disease, dementia can affect people of all ages.
Early symptoms of dementia can be vague and vary between people. While some people pick up on changes in their own thinking or behaviour that might be caused by dementia, sometimes these signs are first noticed by those around them.
If youve noticed a change in someone close to you, the steps below can help you assist them in seeking diagnosis and treatment.
Do Not Ignore Physical Abuse
As much as one needs to be tolerant, kind, forgiving, and patient with older adults who have dementia, it does not mean that they have to excuse the patients when they become physically aggressive and allow the abuse to continue. It is not to be accepted, and if it happens, it is best to alert your doctor who will work on the solution to make sure it stops. It will keep both the patient and caregiver in safety.
From physical manifestations to angry outbursts, taking care of an individual with dementia may not be easy. However, working with the tips above can help caregivers and loved ones to get through it. Remember that there are plenty of treatments, interventions and special care providers who can help therefore, you should never be shy about getting help when you need it.
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Can Dementia Suddenly Get Worse
The progression of dementia depends on the underlying disease. Some diseases have a rapid progression. Others progress more slowly. Any sudden change with either slow or rapid progression should be evaluated for another cause. In most cases, changes with dementia may seem like they came out of the blue when they actually may have been slowly developing in the background. The best way to prepare for changes and manage expectations is through information. Your doctor and medical team will be a valuable resource. There are a variety of educational resources that are also available through the Alzheimer’s Association.
Tips For Living Alone With Early
On this page:
Learn about ways to cope with changes, prepare for the future, and stay active.
Have you been diagnosed with early-stage Alzheimers disease, vascular dementia, Lewy body dementia, or a frontotemporal disorder and live alone? Or, do you have mild cognitive impairment ? If so, these tips are for you.
These tips offer ways to help you cope with changes in memory and thinking, prepare for the future, and stay active.
Use the table of contents at the top of this page to go to different sections. At the end of each section, click on the Back to top link to return to the table of contents.
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