Diagnosed With Dementia Now What

January 1, 2023

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How Other Health And Care Staff Can Help

What is Dementia?

All health and care staff should understand how dementia can affect people. They should know how to give you any extra help you or your carer might need.

You and your care coordinator should talk about which health and care staff you would like to know about your diagnosis. This will be set out in your care plan. As things change over time, you and your care coordinator can review your care plan.

Your Parent Was Diagnosed With Alzheimers Now What

Every 65 seconds someone in the U.S. develops Alzheimerâs disease, according to the Alzheimerâs Association. That someone could be your parent.

My mom was diagnosed with Alzheimerâs disease at the age of 65. She had been showing signs of memory loss for more than a year, so it wasnât difficult for me to accept the diagnosis. What was hard, though, was knowing what to do next.

The one thing I did know was that I was going to have to be the one to take care of her. She was living on her own because she and my dad had divorced, and my only sibling lived several states away. Fortunately, as a personal finance journalist, I had a good idea of what financial steps needed to be taken. Beyond that, thereâs been a lot of trial and error on my part during the 11 years since my momâs diagnosis.

Hereâs what Iâve learned and what you should know if your parent is diagnosed with Alzheimerâs disease.

Help For The People Who Care For You

Any family members or friends who regularly care for you should also get the help they need. If a person who cares for you appears to need support they should be offered an assessment. Help that the person might get could be:

respite care to give them some rest
financial support, such as Carers Allowance

Your local council, a doctor or your care coordinator can put your carer in touch with the right local organisation to help them find out more.

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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:

Get Assessed For Care And Support

What Is Dementia? Types, Symptoms, Causes, Treatment And Care

Your local authority has a duty to do a care and support needs assessment to find out what help you need.

A care and support needs assessment is free.

To arrange an assessment, contact your local social services. Alternatively, a GP, consultant, or another health or social care professional can make a referral to your local authority, after getting your consent.

For more information, read the Alzheimer’s Society’s guide to care and support in England.

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Diagnosis Dementia Now What

No son or daughter wants to think about it, but every day someone’s Mom or Dad gets diagnosed with dementia. It becomes a family crisis unless planning was done prior. Do you have a plan for yourself?

It happens every day. Someones Mom or Dad gets the diagnosis of dementia. There are many types of dementia, and as more Americans live longer lives, more families will deal with the financial and emotional stress that this will have on their loved ones. These long-term health care services will be required for, in many cases, years and years.

Research says that nearly 6 million Americans currently live with Alzheimers or other types of dementia. That number should more than double by the year 2060. This increase in dementia is directly associated with an aging America. As more people live past age 75, we see more people suffer from cognitive decline as the incidence of dementia rises sharply among those older than age 75.

Impact On Families And Carers

In 2019, informal carers spent on average 5 hours per day providing care for people living with dementia. This can be overwhelming . Physical, emotional and financial pressures can cause great stress tofamilies and carers, and support is required from the health, social, financial and legal systems. Fifty percent of the global cost of dementia is attributed to informal care.

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The Most Common Dementia Diagnoses

Below are specific diseases and diagnoses you may have heard associated with dementia.

Alzheimers Disease

The most common form of dementia, Alzheimers disease is associated with the formation of abnormal protein depositsamyloid plaques and tau tanglesin the brain that cause parts of the brain to die. Alzheimers is more than a memory disease. It also affects a persons thinking, language and behavior. Early-onset Alzheimers disease occurs in individuals younger than 65, commonly in their forties or fifties.

Vascular Dementia

Vascular dementia is associated with loss of blood flow related to ischemic strokes or with bleeding due to hemorrhagic strokes. It can often result from many tiny strokes rather than one big one. Someone with vascular dementia may experience sudden decreases in ability following stroke or blood flow events rather than a steady loss of function.

Frontotemporal Degeneration

Frontotemporal degeneration is often first misdiagnosed as psychiatric syndromes due to its impact on behavior and personality. Symptoms commonly appear between ages 40 and 65. FTD is an umbrella term and includes three categories of diagnosis:

Lewy Body Dementia

Parkinsons Dementia

Parkinsons disease may include dementia symptoms later in the disease progression, including confusion, hallucination, paranoia and memory loss. These symptoms can often take 10 to 15 years to develop in Parkinsons disease.

Mild Cognitive Impairment

Chronic Traumatic Encephalopathy

Mixed Dementia

What Are The Most Common Types Of Dementia

Dementia is preventable through lifestyle. Start now. | Max Lugavere | TEDxVeniceBeach

Alzheimers disease. This is the most common cause of dementia, accounting for 60 to 80 percent of cases. It is caused by specific changes in the brain. The trademark symptom is trouble remembering recent events, such as a conversation that occurred minutes or hours ago, while difficulty remembering more distant memories occurs later in the disease. Other concerns like difficulty with walking or talking or personality changes also come later. Family history is the most important risk factor. Having a first-degree relative with Alzheimers disease increases the risk of developing it by 10 to 30 percent.

Vascular dementia. About 10 percent of dementia cases are linked to strokes or other issues with blood flow to the brain. Diabetes, high blood pressure and high cholesterol are also risk factors. Symptoms vary depending on the area and size of the brain impacted. The disease progresses in a step-wise fashion, meaning symptoms will suddenly get worse as the individual gets more strokes or mini-strokes.

Lewy body dementia. In addition to more typical symptoms like memory loss, people with this form of dementia may have movement or balance problems like stiffness or trembling. Many people also experience changes in alertness including daytime sleepiness, confusion or staring spells. They may also have trouble sleeping at night or may experience visual hallucinations .

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Making Decisions About Your Future

You may want to plan ahead for a time when it becomes harder for you to make decisions, or when you might not be able to make your own decisions.

Your care plan can cover the care you would like in the later stages of dementia. You can arrange for someone like a family member or friend to make decisions for you if that is needed. This is called a lasting power of attorney.

You can also make a general statement about your wishes for the future. This is called an advance statement. You can ask your care coordinator or your local council for more information about setting up a lasting power of attorney or making an advance statement.

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This information is for you as you make adjustments and plan your next steps.

Being diagnosed with dementia can be upsetting however, for some people who have been worried about themselves for some time, the diagnosis can come as a relief.

Often people find it easier to manage a diagnosis if they can understand the disease and its implications. This knowledge can also assist in beginning to plan for the future.

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A Named Person To Support You

Your care plan should give you the name of the person who will coordinate all the different support you should get. This named person will be your care coordinator. They will be the main point of contact for you and anyone who is helping to support you. A care coordinator is also sometimes called a care navigator.

Your care coordinator can help you understand what help is available.

Your care coordinator should:

make sure your health is monitored
look at your care plan with you at least once a year to make sure you are getting support
make sure you know about the help you can get
work with your family or friends to make sure you are getting the help you need

Planning For The Future After A Dementia Diagnosis

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What Are The Early Signs Of Dementia

To address the problem identified by its findings, the Alzheimers Society has produced a new checklist in partnership with the Royal College of GPs to help people identify the symptoms of dementia and to encourage them to get diagnosed and seek help.

It includes assessing whether people are suffering from memory problems, such as struggling to find the right words or repeating questions and phrases experiencing issues with daily living such as struggling to pay bills or getting lost when out in public as well as behavioural or emotional problems such as becoming aggressive or withdrawn or acting inappropriately.

Dr Jill Rasmussen, clinical representative for dementia at the Royal College of General Practitioners, said: Its vital for patients, their families and GPs that conversations with the potential for a diagnosis of dementia are timely and effective.

The new checklist developed with Alzheimers Society is a simple, free tool to help patients and their families clearly communicate their symptoms and concerns during an often time-pressured appointment.

This resource could make a real difference in identifying those people who require referral for a more detailed evaluation and diagnosis of their problems.

Were asking anyone who is worried about possible dementia symptoms to use the checklist and share it with their primary care team.

You can access the checklist here and find more information on dementia at the Alzheimers Society and NHS websites.

Accept The Diagnosis And Understand What It Means

Even if youâve seen signs of memory loss in your parent as I did with my mom, the actual diagnosis of Alzheimerâs disease can hit you like a ton of bricks. Itâs OK to be upset. Itâs OK to grieve.

But, remember that your parent needs you for support â especially if there is no spouse or partner. Itâs important for you to accept the diagnosis so you can help your parent come to terms with the diagnosis. According to the Alzheimerâs Association, those with Alzheimerâs say that having people who reassure them that they will be there for them can help with the process of accepting a diagnosis. So let your parent know that youâre in this together.

Itâs also important for you to understand what stage of the disease your parent is in â early, middle or late stage. Your parent likely is in the early stage of the disease if he or she is having memory lapses but still can function independently. On average, people live four to eight years after an Alzheimerâs diagnosis but can live much longer, according to the Alzheimerâs Association.

You could have many years with your parent before the disease truly takes a toll. But the sooner you start creating a plan to deal with your parentâs memory loss, the better.

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Tip : Take Steps To Slow The Advancement Of Symptoms

Even when youve been diagnosed with Alzheimers disease or dementia, there is still a great deal that you can do to slow its progress. The same healthy lifestyle changes and mental stimulation techniques that are used to prevent or delay the onset of dementia can also be effective in slowing the progression of the disease and maintaining your independence for longer.

1. Get moving. Regular exercise stimulates the brains ability to maintain old connections, make new ones, and slow deterioration of your cognitive abilities.

2. Reach out to others. The more you connect face-to-face with others, the more you engage socially, the better your cognitive function will be.

3. Eat well. Eating a brain-healthy diet, such as the Mediterranean diet, can help reduce inflammation, protect neurons, and promote better communication between brain cells.

4. Seek mental stimulation. By continuing to learn new things and challenge your brain, you can strengthen your cognitive skills and stay mentally active for longer.

5. Improve your sleep. Getting quality sleep can flush out brain toxins and avoid the build-up of damaging plaques.

6. Manage stress. Unchecked stress takes a heavy toll on the brain, shrinking a key memory area, hampering nerve cell growth, and worsening Alzheimers symptoms. Relaxation practices and other stress management techniques can help you ease the tension and regain control.

Let Our Care Assessment Guide You

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Our free tool provides options, advice, and next steps based on your unique situation.

A dementia diagnosis also offers you an opportunity to treasure the remaining time you do have with your loved one. Cherish the moments you have together, and seize opportunities to tell them how much they mean to you. Instead of thinking about the skills they have lost or may lose in the future, try to focus on what your loved one can still do.

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What Are The Average Life Expectancy Figures For The Most Common Types Of Dementia

The average life expectancy figures for the most common types of dementia are as follows:

Alzheimers disease around eight to 10 years. Life expectancy is less if the person is diagnosed in their 80s or 90s. A few people with Alzheimers live for longer, sometimes for 15 or even 20 years.
Vascular dementia around five years. This is lower than the average for Alzheimers mostly because someone with vascular dementia is more likely to die from a stroke or heart attack than from the dementia itself.
Dementia with Lewy bodies about six years. This is slightly less than the average for Alzheimers disease. The physical symptoms of DLB increase a persons risk of falls and infections.
Frontotemporal dementia about six to eight years. If a person has FTD mixed with motor neurone disease a movement disorder, their dementia tends to progress much quicker. Life expectancy for people who have both conditions is on average about two to three years after diagnosis.

To find out about the support available to someone at the end of their life, and to their carers, family and friends, see our End of life care information.

You can also call Alzheimers Society on 0333 150 3456 for personalised advice and support on living well with dementia, at any stage.

Dementia Connect support lineDementia Connect support line.

Why Early Diagnosis Of Dementia Is Important

Dementia is a profoundly life-changing condition and reactions to a diagnosis can range from dismay and deep sadness to anger and despair. But for many people, it can also come as a relief. A diagnosis may well provide long-awaited answers for a failing memory, communication problems and changes in behaviour.

An early diagnosis opens the door to future care and treatment. It helps people to plan ahead while they are still able to make important decisions on their care and support needs and on financial and legal matters. It also helps them and their families to receive practical information, advice and guidance as they face new challenges.

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