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What to know about rapid onset dementia

A dementia diagnosis can be an upsetting and challenging time for all involved, but even more distressing is the diagnosis of rapid onset dementia. If you or a loved one are experiencing intense dementia symptoms earlier than expected, you may have questions about what is causing this rapid onset, the early signs to watch out for, how this type of dementia might be diagnosed, and how to manage the condition with care options and more. At Home Instead, our aim is to help people age positively and in place by bringing expert care to their home. For nearly 20 years, we have been providing the highest standard of care, and creating industry-leading training programmes for our Care Professionals that are accredited by nursing and medical professionals. Today, we are the world’s largest global home care network, supporting over 100,000 older adults with personalised, tailored care at home. So whatever questions you have about dementia care, we can help. 

What is rapid onset dementia?

Rapid onset dementia is typically referred to as Rapidly Progressive Dementia (RPD). All types of dementia are progressive and will lead to the deterioration of brain function over time, and each stage of dementia can last a different length of time depending on the individual’s age, health and any other underlying conditions. In the case of rapid onset dementia, this decline can arrive suddenly and act quickly. For context, while other types of dementia might take several years to progress from early to middle stage, and from middle to severe stage, rapid onset dementia can take just weeks or months to reach the next stage, and end-of-life care could be needed earlier than expected. If an individual’s dementia symptoms progress to a severe stage within 1–2 years, they may be diagnosed with Rapidly Progressive Dementia. However, the definition of what is considered Rapidly Progressive Dementia differs depending on the speed of cognitive decline and other health issues, such as inflammatory conditions, infections, metabolic disorders, vascular issues, immune-mediated conditions, and more. Put simply, Rapidly Progressive Dementia could be either:

  1. A fast-acting version of a recognised dementia condition (such as Alzheimer’s disease). If this is the cause, it will result in a quicker decline and eventually lead to end-of-life care. 
  2. A symptom of another underlying condition. If this is the cause, quick intervention and treatment can sometimes halt cognitive decline and lead to a recovery. 
rapid onset dementia

What type of dementia could this be? 

If the cause is a type of dementia, it is important to know that any type of dementia can progress faster than the typical timeline – everyone’s condition is unique to them and the rate of progression often depends on their age and other health factors. However, one rare type of dementia that typically causes rapid cognitive decline is Creutzfeldt–Jakob disease (CJD). This is a type of prion disease, meaning it negatively impacts prion protein in the brain and destroys cells. Creutzfeldt-Jakob disease is extremely rare, occurring in around one in 1 million people around the world each year, however studies have found that it could be one of the most prominent types of Rapidly Progressive Dementia. 

What are the early signs and symptoms? 

The signs and symptoms of Rapidly Progressive Dementia are the same as other forms of dementia, except they progress much faster. Some of the early signs to be aware of include:

  • Short-term memory issues 
  • Difficulty finding the right words and communicating, which can cause repetition 
  • Changes in mood, such as feeling depressed or anxious, or mood swings 
  • Poor judgement and difficulty completing tasks on their own 
  • Confusion and disorientation with things like sense of direction

You can read more about the typical symptoms of dementia in our article: What Is Dementia?Studies suggest that compared to Alzheimer’s disease (which tends to progress slowly), those with Rapidly Progressive Dementia experienced a faster decline in neuropsychological tests that measured things like working memory, language, attention, and executive function.

What causes the rapid deterioration?

In some cases, the rapid deterioration may be caused by an underlying medical condition. There are many conditions that could cause this symptom, such as an infection (like encephalitis or meningitis), an inflammatory disorder, impaired blood flow to the brain, exposure to a toxic substance, cancer, or recurrent strokes. Metabolic disturbances like an electrolyte imbalance or hypoglycaemia could also be to blame, as could an adverse reaction to certain medications. In these cases, the rapid decline is often due to an acute disruption in brain function rather than the gradual neurodegeneration seen in other types of dementia. When this is the case, it should be considered an urgent matter and the underlying cause identified and treated as soon as possible to prevent further decline. Rapidly Progressive Dementia could also be due to a complication from another type of dementia, such as someone with Alzheimer’s disease having a seizure, which can cause symptoms to suddenly progress at a faster rate.When dementia symptoms are not caused by an underlying medical condition or a complication, it is unclear why some dementia conditions progress faster than others. 

rapid onset dementia

How is Rapidly Progressive Dementia diagnosed? 

Diagnosing Rapidly Progressive Dementia is a difficult but important undertaking, as – if the person is experiencing dementia symptoms due to an underlying medical condition – diagnosis and treatment should be swift and thorough in order to stop further cognitive decline and maintain the person’s health and quality of life. A doctor will be able to use different diagnostic tools depending on what they suspect the person’s condition is, but this will typically involve a physical examination, a medical history review, and diagnostic tests such as MRI scans, blood analyses, cerebrospinal fluid analyses and more to determine all the factors that could be at play. The goal is to rule out any reversible causes and start treatment for these immediately. If dementia is thought to be the sole cause of the cognitive decline, diagnosis requires discussion with the individual and their family to establish how quickly the symptoms have progressed compared to the person’s previous cognitive abilities. The National Institute for Health and Care Excellence says diagnosis of dementia typically involves checking to understand the person’s medical history, and an assessment of any coordination abnormalities, sensory issues, motor symptoms, visual or auditory problems, cardiovascular signs, or other causes of symptoms. When the rate of deterioration is established, plans can be made to manage further decline.

Can anything be done to treat Rapidly Progressive Dementia? 

If dementia is thought to be the primary cause, neurological evaluations and laboratory tests will likely still take place, however the goal will switch from cure and prevention to management of the condition in order to slow the dementia as much as possible and maximise quality of life for the person. Treatments for Rapidly Progressive Dementia will differ depending on the specific type of dementia, but will ultimately focus on making the person feel comfortable and minimising their symptoms. This might be done using, for example, a mix of:

  • Medications to slow the onset
  • Supportive therapies to address the emotional impact of the condition
  • Occupational therapy to help them maintain independence for as long as possible
  • Speech therapy to help with communication issues
  • Treatments to address additional symptoms (such as sleep aids for insomnia issues)

Where can I get support for Rapidly Progressive Dementia? 

A diagnosis of Rapidly Progressive Dementia can be extremely distressing, not only due to the nature of the symptoms but because of the rate at which they progress. This can be a devastating diagnosis for both the person suffering and for their loved ones, and it can feel like time is against you. During this challenging period, accessing support is crucial in order to maintain the best quality of life possible throughout. Whether for yourself or a loved one, here are some options you may wish to explore:

  • The Alzheimer’s Society offers resources, helplines and an online forum aimed at offering guidance and emotional support for those affected by a diagnosis of Rapidly Progressive Dementia.
  • Your local NHS services may provide access to specialists who can offer bespoke treatment plans, therapies and support groups to maximise your quality of life during this time – it is always worth reaching out to see what may be on offer in your area.
  • Organisations like Dementia UK offer expert dementia care, knowledge and support to people facing the challenges of Rapidly Progressive Dementia, as well as their families, and anyone providing care to someone with dementia. 
  • You can apply to your local council for home care services to enable you to remain in the comfort and familiarity of your own home as your condition progresses. You may find our article on arranging home care useful: How To Choose & Arrange Home Care Services. Or, you can explore home care agencies like Home Instead for tailored packages to suit your exact needs, from occasional companionship to full-time live-in care. 

Our award-winning home care is bespoke to each individual, and can be adapted over time as your condition progresses. We understand that a diagnosis of Rapidly Progressive Dementia can be an extremely upsetting time, so we aim to make your home care options simple, flexible and personalised to your needs and preferences, so you can focus on quality time with your loved ones safe in the knowledge that your care will be in the very best hands. Home Instead is an award-winning home care provider and part of a worldwide organisation devoted to providing the highest-quality relationship-led care for older people in their own homes. Arranging care for yourself or your loved one shouldn’t be stressful, so whatever questions you would like answered, feel free to reach out to the Home Instead team to discuss your needs.