After A Diagnosis Of Dementia: Next Steps
A diagnosis of dementia can be a big shock for the person with the condition, and their family. It can be difficult to know what to do, what decisions need to be made, who to tell, what support is available and what happens next.
There can either be a lot of information given to you at the time of diagnosis, or not very much at all. Either way, whatever is said to you at the time of diagnosis can be forgotten in this emotional and challenging time.
Our dementia specialist Admiral Nurses provide life-changing support for families affected by all forms of dementia, including Alzheimers disease. They work in the community, in GP practices and NHS hospitals, in Admiral Nurse clinics, and on our free Dementia Helpline. They have the time to listen and the knowledge to solve problems.
The families we work with have told us they want a simple checklist of what to ask, what to do and who to approach so the important next steps are clearly outlined in one place, with links to more detailed information to consider later, when its needed.
Coping With A Dementia Diagnosis
It can be difficult to accept an Alzheimers or dementia diagnosis. Sadness, anger, denial, and fear are just a few of the emotions you and your loved one may experience. You may be grieving for your parent especially if they already have significant memory loss.
Encourage your loved one to talk to you about their feelings honestly. Its OK if you dont have all the answers and solutions. A listening ear can go a long way.
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.
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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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.
Why Its Important To Know The Type Of Dementia
While no two people have the same experience of dementia, identifying the type of dementia in individuals helps families, carers and care workers to provide the right care and support. If we were given a diagnosis of cancer, we would expect to know what type we have so that the best possible treatment and management programmes can be put in place. It is no different for people with dementia.
As a simple illustration of the differences, someone with Alzheimers disease or vascular dementia would expect to experience memory and communication problems while a person with fronto-temporal lobe dementia would be more likely to show changes in personality rather than memory. Consequently, this could well involve a different approach to care and support provided.
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Designed For You Defined By You
YourLife of Wildwood provides the most exceptional Memory Care and uplifting lifestyle for our residents. In fact, we were created with that one purpose in mind. Each day, we focus all our energy, attention and resources to creating an environment that caters to each residents personal needs, choices and individuality, while ensuring unequaled peace of mind and dedicated support for families. At YourLife of Wildwood, we have the ability to design and personally tailor plans around our residents thanks to our sole focus on memory care. We understand that everyone has their own story, specific needs and retained abilities, so we develop personally inspired care plans that help to enhance and support each persons independence while enriching their days. To ensure further peace of mind, our team of YourLife Personal Care Specialists are on site 24 hours a day, seven days a week to provide assistance with everyday activities, gentle reminders and redirection. With our signature YourStory programming, we not only personalize memory care, but we are able to create an individual experience centered around each resident. From cultural, educational and wellness programming to scheduled outings and other special events, to personal care, assistance and multiple therapies, we create days with meaning. At YourLife of Wildwood, our residents and their families know that this is a community designed for you, with a lifestyle defined by you. Contact us to learn more! t today.
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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The Seven Stages Of Dementia
One of the most difficult things to hear about dementia is that, in most cases, dementia is irreversible and incurable. However, with an early diagnosis and proper care, the progression of some forms of dementia can be managed and slowed down. The cognitive decline that accompanies dementia conditions does not happen all at once – the progression of dementia can be divided into seven distinct, identifiable stages.
Learning about the stages of dementia can help with identifying signs and symptoms early on, as well as assisting sufferers and caretakers in knowing what to expect in further stages. The earlier dementia is diagnosed, the sooner treatment can start.
Who Can Diagnose Dementia
Visiting a primary care doctor is often the first step for people who are experiencing changes in thinking, movement, or behavior. However, neurologists doctors who specialize in disorders of the brain and nervous system are often consulted to diagnose dementia. Geriatric psychiatrists, neuropsychologists, and geriatricians may also be able to diagnose dementia. Your doctor can help you find a specialist.
If a specialist cannot be found in your community, contact the nearest medical school neurology department for a referral. A medical school hospital also may have a dementia clinic that provides expert evaluation. You can also visit the Alzheimers Disease Research Centers directory to see if there is an NIA-funded center near you. These centers can help with obtaining a diagnosis and medical management of conditions.
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Get Assessed For Care And Support
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.
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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S To Take If Your Loved One Has Been Newly Diagnosed With Dementia
You cant change your loved ones diagnosis, but there are things you can do to help them cope and stay healthy and safe for as long as possible.
Can Dementia Be Inappropriately Diagnosed In A Single Visit
Sadly, yes. Although its common for doctors to never diagnose dementia at all in people who have it, I have also come across several instances of busy doctors rattling off a dementia diagnosis, without adequately documenting how they reached this conclusion.
Now, often these doctors are right. Dementia becomes common as people age, so if a family complains of memory problems and paranoia in an 89 year old, chances are quite high that the older person has dementia.
But sometimes its not. Sometimes its slowly resolving delirium along with a brain-clouding medication. Sometimes its depression.
It is a major thing to diagnose someone with dementia. So although its not possible for an average doctor to evaluate with as much detail as the memory clinic does, its important to document consideration of the five essential features as listed above.
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How Dementia Causes Death
A person in the late stage of dementia is at risk for many medical complications, like a urinary tract infection and pneumonia . They’re at an even higher risk of certain conditions because they’re unable to move.
Trouble swallowing, eating, and drinking leads to weight loss, dehydration, and malnutrition. This further increases their risk of infection.
In the end, most people with late-stage dementia die of a medical complication related to their underlying dementia.
For example, a person may die from an infection like aspiration pneumonia. This type of pneumonia usually happens because of swallowing problems.
A person may also die from a blood clot in the lung because they are bedbound and not mobile.
It’s important to know that late-stage dementia is a terminal illness. This means that dementia itself can lead to death. Sometimes this is appropriately listed as the cause of death on a death certificate.
A Person With Dementia Doesnt Always Fit Into One Stage
Dementia affects each person in a unique way and changes different parts of the brain at different points in the disease progression.
Plus, different types of dementia tend to have different symptoms.
For example, someone with frontotemporal dementia may first show extreme behavior and personality changes. But someone with Alzheimers disease would first experience short-term memory loss and struggle with everyday tasks.
Researchers and doctors still dont know enough about how these diseases work to predict exactly what will happen.
Another common occurrence is for someone in the middle stages of dementia to suddenly have a clear moment, hour, or day and seem like theyre back to their pre-dementia abilities. They could be sharp for a little while and later, go back to having obvious cognitive impairment.
When this happens, some families may feel like their older adult is faking their symptoms or just isnt trying hard enough.
Its important to know that this isnt true, its truly the dementia thats causing their declining abilities as well as those strange moments of clarity theyre truly not doing it on purpose.
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What To Do If A Loved One Is Suspicious Of Having Dementia
- Discuss with loved one. Talk about seeing a medical provider about the observed changes soon. Talk about the issue of driving and always carrying an ID.
- Medical assessment. Be with a provider that you are comfortable with. Ask about the Medicare Annual Wellness exam.
- Family Meeting. Start planning, and gather documents like the Health Care Directive, Durable Power of Attorney for Health Care, Estate Plan.
The Dementia Uk Next Steps Checklist
This checklist has been written by dementia specialist Admiral Nurses, to help in the early days after you or your family member has received a diagnosis of dementia.
For each item on the checklist, there is a further link to additional information, as and when you need it. If you dont have access to the internet, you can contact our Admiral Nurse Dementia Helpline for more information and support .
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Know The Signs Of Dementia
Early diagnosis can help people with dementia plan for the future, and might mean they can access interventions that help slow down the disease. Being familiar with the signs of dementia can help people receive a diagnosis as early as possible.
Early signs that a person might have dementia can include:
- being vague in everyday conversations
- memory loss that affects day-to-day function
- short term memory loss
- difficulty performing everyday tasks and taking longer to do routine tasks
- losing enthusiasm or interest in regular activities
- difficulties in thinking or saying the right words
- changes in personality or behaviour
- finding it difficult to follow instructions
- finding it difficult to follow stories
- increased emotional unpredictability.
Dementia Books On Prescription
Reading Well Books on Prescription offer helpful information for people diagnosed with dementia, and their relatives and carers.
GPs and other healthcare professionals can recommend titles from a wide range of books about dementia.
The books are available for anyone to borrow free of charge from their local library. Some books might be available as e-books or audiobooks.
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Who Is At Risk For Vascular Dementia
Some risk factors for vascular dementia can be managed others, like age and gender, cannot. Among all factors, high blood pressure carries the greatest risk vascular dementia almost never occurs without it.
Likewise, a high risk of stroke goes hand in hand with risk for vascular dementia. One-quarter to one-third of strokes are thought to result in some degree of dementia. People who smoke, consume excessive amounts of alcohol, have diabetes, or heart disease also have a higher rate of the condition.
Vascular dementia most commonly occurs in people between the ages of 60 and 75. Men seem to be more vulnerable than women, and the condition affects African-Americans more often than other races. People whose age, sex, or race puts them at increased risk of vascular dementia have that much more reason to manage risk factors within their control.