Dementia – Useful information and tips
Young-onset dementia
Types of young-onset dementia & early-onset dementia
Anyone living with dementia who is under 65 years of age is described as having early-onset or young-onset dementia. The age of retirement has historically been 65, and the term ‘young-onset’ refers to dementia occurring before the traditional retirement age. It is estimated that 42,000 younger people (under 65 years of age) are living with dementia in the US. 10% of all young-onset dementia diagnoses indicate that the condition has been inherited from a parent, which suggests that young-onset dementia is more likely to be hereditary than other forms of dementia. The causes of young-onset dementia are similar to other forms of dementia, but there are some important differences.
Young-onset Alzheimer’s
As with ‘late-onset’ Alzheimer’s, this type of dementia is caused by the formation of abnormal proteins called plaques and tangles in the brain which implicate the nerve cells’ ability to communicate. Alzheimer’s is the most common type of dementia in both older and younger people, but younger people are more likely to have an ‘atypical’ (unusual) form of Alzheimer’s. Unlike Alzheimer’s typically experienced by older people, the initial symptoms of Atypical Alzheimer’s is not memory loss, but problems with vision, speech or planning, decision-making and behavior.
Young-onset vascular dementia
As with ‘late-onset’ vascular dementia, this type of ‘young-onset’ dementia is caused by restricted bloodflow to the brain, starving the brain cells of oxygen. Vascular dementia is closely linked to diabetes and to cardiovascular diseases in younger people. Symptoms of vascular dementia may vary and younger people are more likely to experience problems with thought processing than memory loss.
Vascular dementia can also be hereditary, and this genetic form of vascular dementia known as CADASIL (cerebral autosomal dominant arteriopathy with subcortical infarcts and leukoencephalopathy) is most common in people aged 30 to 50. Symptoms of CADASIL include migraines, repeated strokes, fits, low mood and progressive loss of mental abilities.
Young-onset frontotemporal dementia
As with late-onset frontotemporal dementia, the build-up of abnormal proteins inside the nerve cells in the front and side areas of the brain interrupt the communication between cells. Whilst frontotemporal dementia is somewhat rare in older people, the percentage of younger people living with frontotemporal dementia is significantly higher at around 10-15%. Medical research has established notable evidence to suggest that frontotemporal dementia is genetic in approximately 1 in 3 occasions.
Young-onset alcohol-related brain damage
Alcohol-related brain damage includes Wernicke Korsakoff’s syndrome and alcoholic (or alcohol-related) dementia. ARBD is caused by a lack of thiamine (vitamin B1), direct damage to nerve cells from alcohol which is a toxin, head injuries and a poor diet. This type of dementia occurs most often in younger people who are often diagnosed in their 50s. At least 10% of people living with alcohol-related dementias are classed as younger people. Symptoms of ARBD are dependent on the area of the brain that is damaged. Symptoms include memory loss, difficulty in planning, making decisions and judgements, impulsive behaviours such difficulty controlling emotions, problems with attention and a lack of sensitivity.
Rarer forms of young-onset dementia
A significantly higher proportion of younger people than older people develop rarer types of dementia (around 20-25%). Neurological conditions such as Huntington’s disease, progressive supranuclear palsy, corticobasal degeneration and Creutzfeldt-Jakob disease (CJD) cause progressive damage to the nervous system and these degenerative neurological conditions are known to cause dementia. Metabolic disorders such as Gaucher’s disease, Tay Sach’s disease and Niemann-Pick’s disease are also known causes of young-onset dementia because they typically develop in childhood or adolescence. Hormone disorders such as thyroid problems, vitamin deficiencies, inflammatory conditions such as multiple sclerosis and infections such as HIV are also known causes of dementia – particularly in younger people.
Causes of dementia
What causes dementia?
Although dementia is typically associated with age, dementia is not a normal part of ageing. There are many different types of dementia, and each can be caused by a variety of different factors. The particular reason that causes someone to develop dementia is still unknown, but lifestyle is thought to have a significant role in the risk of developing dementia.
Lifestyle causes
Lifestyle choices such as maintaining a healthy diet, participating in regular exercise and avoiding smoking will help reduce the risk of serious conditions such as stroke, heart disease and cancer – all of which contribute to increased risk of developing dementia.
Specific causes
All dementias are caused by the destruction of nerve cells in the brain, but certain types of dementias have more specific causes than others.
Vascular dementia – when bloodflow to the brain is restricted by an obstruction in the blood vessels, the brain doesn’t receive sufficient oxygen for the cells to respire effectively. Without sufficient oxygen, the cells in the brain will die, which disrupts the communication of information around the brain and body and causes symptoms of dementia to develop.
Diseases – dementias caused by other diseases account for approximately 5% of dementia diagnoses in the US. Parkinson’s, Huntington’s, HIV, progressive supranuclear palsy, Creutzfeldt-Jakob disease and learning disabilities all contribute to the development of dementia for those living with the condition.
Injury – medical and scientific research for trauma-related dementias is still in its early stages at the moment, but there is some initial evidence to suggest that some types of traumatic brain injury – particularly if repetitive (such as those received by sports players) have been linked to the development of dementia in later life.
Reversible factors – some dementias can be caused by underlying causes including vitamin deficiencies, thyroid abnormalities and mental health conditions such as depression.
Signs, symptoms and stages of dementia
Dementia is a collective term for conditions causing a decline in cognitive function. Although Alzheimer’s is the most common form of dementia, there are many different types of dementia and each type has its own pattern of progression, with symptoms and signs attributed to different stages of the journey. Understanding the early signs of dementia is important when it comes to managing the condition.
Of the 5 million + people currently living with dementia in the US, each individual will experience dementia – and dementia symptoms – in their own unique way. While the type and progression of dementia vary, a general guide to the stages of dementia will help you understand what to expect and plan for the future.
There are two main ways of measuring the progression of dementia: the three-stage model and the seven-stage model. The seven-stage model is most appropriate for identifying the stages of Alzheimer’s, and the three-stage model can be used for most other types of dementia.
Stages of Alzheimer’s
The changes in the brain may begin 20 years or more before a formal diagnosis, and the rate of progression of Alzheimer’s varies greatly. The abnormal proteins (plaques and tangles) build-up in structures of the brain and usually spread throughout the brain in a predictable pattern. In the earliest stages, before dementia symptoms can be detected with current tests, plaques and tangles begin to form in brain areas involved in learning & memory (image 2) and thinking & planning (image 3). In the mild to moderate stages, plaques and tangles spread and begin to affect thinking and planning, (image 4), language & speech (image 5) and spatial awareness (image 6) which begin to interfere with everyday life. In the advanced stages of dementia (image 7), the cortex becomes significantly damaged and the brain reduces in size as the cells deteriorate. As the proteins spread to different brain structures, the different functions of those structures become affected.
Alzheimer’s and dementia stages
The seven-stage progression of Alzheimer’s
Stage 1 – No cognitive decline
In this stage, the person functions normally, with normal cognitive function, no memory loss and generally good mental health. People with stage 1 have no dementia.
Stage 2 – Very mild cognitive decline
General forgetfulness as a general part of ageing is associated with stage 2. Forgetfulness is mild and unnoticed by loved ones and medical professionals.
Stage 3 – Mild cognitive decline
At this stage, loved ones may begin to notice signs of cognitive decline, such as forgetfulness and slight difficulty concentrating which begin to impact on daily life. A person at stage 3 may also become disorientated, lost and have difficulty in finding the right words. On average, a person is at stage 3 approximately 7 years before the onset of dementia.
Stage 4 – Moderate cognitive decline
Symptoms at stage 4, the impact on daily life becomes increasingly significant. Stage 4 dementia can be identified by symptoms including significant difficulty concentrating, memory loss, disorientation and inability to travel alone to new locations. As communication problems develop, someone living with stage 4 dementia may start withdrawing from loved ones and avoiding interaction. The average duration of stage 4 dementia is 2 years.
Stage 5 – Moderately severe cognitive decline
Those living with stage 5 dementia will need assistance to complete their daily activities (dressing, bathing, preparing meals). Memory loss will become more severe and may affect the ability to recall major relevant aspects of life such as address or phone number and someone living with stage 5 dementia may not know the time or day or where they are. The average duration of stage 5 is 1.5 years.
Stage 6 – Severe cognitive decline
Someone living with stage 6 dementia will require extensive support with daily life including continence care as control over the bladder and bowel declines. The names of close family members and memories of both recent events and details of early life will fade. Stage 6 can also be identified by personality changes (such as delusions, compulsive behavior, anxiety and agitation), difficulty in speaking, counting down from 10 and finishing basic tasks. The average duration of stage 6 is 2.5 years.
Stage 7 – Very severe cognitive decline
Stage 7 dementia has the most significant impact on someone’s life. People in this stage typically demonstrate minimal ability to speak or communicate and they will require extensive support with all aspects of daily life including continence care and personal care due to the loss of psychomotor skills (the ability to control movement). The average duration of stage 7 is 2.5 years.
The three-stage progression of other types of dementia
Vascular dementia stages
The symptoms of vascular dementia can occur suddenly, following one large stroke or they can develop over time, after a series of smaller strokes. The progression of stroke-related or vascular dementia symptoms usually follows a ‘stepped’ pattern, with a combination of longer periods of time when symptoms are stable and periods when symptoms change rapidly.
Mild
Early-stage vascular dementia can often share symptoms with Alzheimer’s, with the key difference being that mild vascular dementia symptoms are usually associated with difficulties in planning, decision-making, and following instructions rather than memory loss. Other early symptoms include:
- A reduction in speed of thought
- Difficulty in concentrating
- Loss of bladder control is common with early subcortical vascular dementia
- Symptoms attributed to the stroke
Moderate
As vascular dementia progresses, the earlier symptoms will become increasingly evident. Since vascular dementia affects various aspects of thought processes such as problem-solving, concentrating, reasoning and communication, someone living with moderate vascular dementia may experience:
- Periods of sustained confusion
- Memory loss
- The development of unusual behaviors
- Severe
- In the later stages of vascular dementia, the individual may:
- Become decreasingly aware of what is happening around them
- Experience delusions and hallucinations.
- Someone living with vascular dementia will become increasingly dependent on the support of medical professionals and care providers to assist them with most aspects of everyday life such as eating, bathing and dressing.
Stages of frontotemporal dementia
The rate at which FTD progresses varies greatly and research has found that the differences between different types of FTD become less obvious as dementia progresses. Those who originally exhibited symptoms of behavioral variants may eventually experience language difficulties and similarly, a person originally diagnosed with a language variant of FTD will typically develop behavioral problems. The symptoms and signs of behavioral variant frontotemporal dementia are generally unaware of their behavior and will rely on their loved ones to identify new and unusual characteristics.
Mild
Unlike Alzheimer’s, the early stage of frontotemporal dementia doesn’t usually affect memory or cognitive functioning. Someone with FTD may go walking without obvious purpose but, unlike someone with Alzheimer’s, will return home without getting lost.
During the early stages of behavioral FTD, changes to personality and behavior become noticeable. Typical behavioral changes include:
- Becoming uncharacteristically selfish or apathetic
- Acting impulsively
- Developing obsessive or compulsive behaviors
- With language variants of frontotemporal dementia, difficulties with language become apparent slowly.
- Semantic dementia primarily affects the ability to understand language
- Aphasia affects the ability to produce fluent speech
- Moderate
- The earlier symptoms of frontotemporal dementia will become increasingly evident.
With behavioral variants:
Inappropriate behaviors will become more frequent and more intense.
With language variants:
Aphasia will continue to implicate speech production and signs of moderate aphasia may include:
- Stuttering
- Mispronunciation
- Grammatical errors
- Impaired understanding
- Semantic dementia causes:
- Vocabulary to decline
- Confusion regarding the meaning of familiar words,
- Difficulty in finding the right word
- Difficulty with recognizing familiar objects
Severe
In the later stages of all types of FTD, more structures of the brain become damaged. Someone living with later stages of FTD usually experiences symptoms that are similar to the later stages of Alzheimer’s disease such as:
- A disinterest in their surroundings
- Difficulties in communication
- Inability to recognize loved ones
- Behavioral changes may cause increased aggression or agitation.
- At this late stage, full-time care will be needed to meet the needs of the individual and maximize their ability to access an enriched life wherever possible.
Dementia with Lewy bodies
Each person living with dementia with Lewy bodies will have a different experience, but like all types of dementia, DLB is progressive and the abnormal proteins responsible for the causing damage to brain cells (Lewy bodies) will continue to build up in structures of the brain. The spread and density of the Lewy bodies will vary with each individual. This means that the symptoms each individual will experience is also unique to each person because the Lewy bodies will affect different parts of the brain which have different functions.
Mild
Dementia with Lewy bodies also shares symptoms with Alzheimer’s in the early stage, and symptoms include:
- Problems with attention and awareness, which can fluctuate significantly daily and even from moment to moment.
- Difficulty in judging distances
- Disorientation can lead to falls and fainting
- Sleeping becomes disrupted
- Ability to plan and organize becomes affected
- Recurrent visual and auditory hallucinations can lead to distorted perceptions and delusions of persecution
Moderate
The earlier symptoms of dementia with Lewy bodies will become increasingly noticeable and signs that someone living with dementia with Lewy bodies has reached a moderate stage include:
- Noticeable decline in motor skills which cause difficulties with movement.
- Twitching
- Stiffness
- Slow movements
- Loss of balance or coordination
- Severe
- As dementia with Lewy bodies progresses into the ‘severe’ stage, symptoms include:
- Frequent and sustained confusion about days, times and places
- Significant memory decline which may include forgetting events, names and faces
- Communication problems become increasingly evident and speech can become challenging
- Behavioral changes such as compulsive rituals, repetition and agitation
- Slow movements
- Difficulties in swallowing and eating – often causing weight loss
Caring for someone living with dementia
Tips to help you support your loved one
Even if you’ve been aware that your loved one has been displaying symptoms of dementia for some time, a formal diagnosis can still feel like a shock. You’ll naturally feel concerned for your loved one’s wellbeing and how you can support them, but it’s important to remember that your wellbeing is also important when caring for others.
Caring for a loved one can be both a rewarding and isolating experience. Your commitment to caring for your loved one can often lead to you disregarding your own wellbeing because you may feel guilty or anxious when leaving them for any amount of time from 5 minutes to 5 days. It’s absolutely essential to find a balance between caring for both your loved one and yourself. If you’re finding it increasingly difficult to manage the care of a loved one, seeking support is vital. If you’re feeling overwhelmed:
- Share the care. Sharing your responsibilities with others can be immensely beneficial for everyone. By introducing a care provider, your loved one will receive regular support from specially trained and experienced professionals who have committed their careers to providing compassionate care to those living with dementia. Regular care visits will enable you to pursue your own lifestyle with the reassurance and peace of mind that your loved one is receiving bespoke, heartfelt care. Being cared for by different carers can be a really positive experience for your loved one too. They’re able to build friendships and engage with new people in the comfort of their own home.
- Establish a support network. Your support network may include your loved one, their medical team, local communities and charities, as well as friends and family. In many ways, your lifestyle will undergo changes as your loved one’s dementia progresses, and it’s important to ensure that you are able to share your experiences with others and seek support.
Practical tips for the home:
- Consider colors and patterns in the home. As dementia affects perception, dark colored rugs can sometimes look like holes in the floor, and switches that are the same color as walls can be difficult to see.
- Help your loved one keep a diary of things they want to remember
- Pin a weekly timetable somewhere that’s easily accessible
- Put emergency items such as a phone within their reach
- If your loved one has a daily newspaper delivered to remind them of the date and day, clear away old papers to avoid confusion
- Help your loved one locate household items by labelling cupboards or drawers
- Place helpful telephone numbers by the phone
- Leave reminders in helpful places – for example, put a note on the front door to take their keys
- Install safety devices, such as gas detectors and smoke alarms
- Ease the stress of paying bills by setting up direct debits
- A pill organizer box can be helpful for remembering which medications to take and when
Making decisions on behalf of a loved one
As dementia progresses and reaches more advanced stages, the thought processes and ability to make decisions become increasingly difficult. This implicates an individual’s ability to consent to decisions about their care.
At this stage, your loved one may need to be assessed to determine their mental capacity.
Mental capacity
As dementia progresses, the structures in the brain that are responsible for problem-solving, reasoning, thought processing and decision-making functions may become affected. Just as the type and progression of dementia is unique to each individual, the extent to which dementia affects mental capacity will vary, for example, someone may lack capacity to decide on complex financial issues but the capacity to make other decisions such as which items to buy at the local shop remain unaffected.
The more advanced stages of dementia may struggle to make and communicate their decisions. At this stage, your loved one may benefit from a mental capacity assessment. Care providers and health professionals are governed by the Mental Capacity Act (MCA), which is designed to protect and restore power to vulnerable adults who lack capacity, as well as those who have capacity and choose to plan for their future.
Five key principles of the MCA:
- Every adult has the right to make his or her own decisions and must be assumed to have capacity to do so unless it is proved otherwise
- All practicable effort should be made to encourage and support individuals to make decisions for themselves
- Everyone has their own values, beliefs and preferences which may not be aligned to your own, but this is not a reasonable rationale for assuming mental incapacity
- Anything done for or on behalf of a person who lacks mental capacity must be done in their best interests
- A best interests decision should be the least restrictive option when considering the person’s rights and freedoms of action
Power of attorney
In the event that an individual lacks mental capacity, but decisions need to be made regarding their care, it is advisable for a power of attorney to act on their behalf. A power of attorney can be established through a solicitor. This process is significantly more straightforward if completed whilst the person requiring care has mental capacity to nominate a power of attorney themselves. A nominated attorney has the authority to act legally in their loved one’s best interests for financial and property matters, plus decisions on welfare and medical treatment.
How to behave – act as naturally as possible
Whilst certain cognitive tasks may be more difficult than others, emotions and feelings can remain intact. In the later stages of dementia, when long-term memory becomes affected, your loved one may not remember that their partner passed away and they may request to visit them. If you share the distressing news that they have passed away, your loved one will experience the grief as intensely as if it were the first time, and avoiding traumatic situations is of fundamental importance to maintaining your loved one’s wellbeing. In this scenario, it may be advisable to plan a trip to visit their partner in the future, by which point the arrangement will have been forgotten and their feelings will have been protected.
Clear communication – When caring for your loved one, maintaining their dignity is of fundamental importance. Your loved one may feel distressed as their dementia affects aspects of their everyday life, but by keeping communication clear and simple, you’ll help your loved one feel supported in interaction.
Distract and redirect – There will be times, particularly during the later stages of dementia, when your loved one may struggle to communicate with you or perform a certain task. Sometimes, even attempting to assist them can be extremely frustrating for them, so redirection and distraction can be useful ways to soothe these frustrations. Changing the subject to something new will help engage you both in a new activity.
Allow your loved one to make decisions – Freedom of choice is an important way to maintain independence. Although decision-making abilities may be affected by dementia, there are creative ways to ensure that your loved one is still able to make choices for themselves. Open-ended questions such as “what would you like for dinner?” can cause distress, but enabling your loved one to choose their preference from a selection of options, for example, “would you like shepherd’s pie or fish & chips for dinner?” will protect their freedom of choice and independence.
False truths – As dementia progresses, your loved one may begin to share stories which you know to be untrue. Although human nature would be to correct them, it’s important to understand that the story is true in the mind of your loved one and correcting or challenging them may this may cause confusion and distress.
Keep life positive – A journey with dementia can be distressing for everyone involved, and maintaining a positive outlook in spite of the daily challenges can sometimes feel impossible. But there is joy to be found in every day. Look for elements of happiness and positivity in everyday life and share these with your loved one. Although they may not acknowledge your positivity in a way you’d expect, your influence will help support their mental wellbeing.
Be open and honest – If a friend or family member finds it hard to talk about dementia, make the first move and explain how they are able to help you. This will shift the focus of power to the person living with dementia and enable them to feel like they have the ability to support others.
