Dementia is a syndrome associated with many neurodegenerative diseases, characterized by a general decline in cognitive abilities that affects a person's ability to perform everyday activities. This typically involves problems with memory, thinking, behavior, and motor control. Aside from memory impairment and a thought disorder, the most common symptoms of dementia include emotional problems, difficulties with language, and decreased motivation. The symptoms may be described as occurring in a continuum over several stages. Dementia is a terminal illness, having a significant effect on the individual, their , and their social relationships in general. A diagnosis of dementia requires the observation of a change from a person's usual mental functioning and a greater cognitive decline than might be caused by the normal aging process.
Several diseases and injuries to the brain, such as a stroke, can give rise to dementia. However, the most common cause is Alzheimer's disease, a neurodegenerative disorder. Dementia is a neurocognitive disorder with varying degrees of severity (mild to major) and many forms or subtypes. Dementia is an acquired brain syndrome, marked by a decline in cognitive function, and is contrasted with neurodevelopmental disorders. It has also been described as a spectrum of disorders with subtypes of dementia based on which known disorder caused its development, such as Parkinson's disease for Parkinson's disease dementia, Huntington's disease for Huntington's disease dementia, vascular disease for vascular dementia, HIV infection causing HIV dementia, frontotemporal lobar degeneration for frontotemporal dementia, Lewy body disease for dementia with Lewy bodies, and . Subtypes of neurodegenerative dementias may also be based on the underlying pathology of misfolded proteins, such as synucleinopathies and tauopathies. The coexistence of more than one type of dementia is known as mixed dementia.
Many neurocognitive disorders may be caused by another medical condition or disorder, including brain tumours and subdural hematoma, endocrine disorders such as hypothyroidism and hypoglycemia, nutritional deficiencies including thiamine and niacin, infections, immune disorders, liver or kidney failure, metabolic disorders such as Kufs disease, some leukodystrophies, and neurological disorders such as epilepsy and multiple sclerosis. Some of the neurocognitive deficits may sometimes show improvement with treatment of the causative medical condition.
Diagnosis of dementia is usually based on Medical history and cognitive testing with Neuroimaging. may be taken to rule out other possible causes that may be reversible, such as hypothyroidism (an underactive thyroid), and imaging can be used to help determine the dementia subtype and exclude other causes.
Although the greatest risk factor for developing dementia is aging, dementia is not a normal part of the aging process; many people aged 90 and above show no signs of dementia. Risk factors, diagnosis and caregiving practices are influenced by cultural and socio-environmental factors. Several risk factors for dementia, such as smoking and obesity, are preventable by lifestyle changes. Screening the general older population for the disorder is not seen to affect the outcome.
Dementia is currently the seventh leading cause of death worldwide and has 10 million new cases reported every year (approximately one every three seconds). There is no known cure for dementia. Acetylcholinesterase inhibitors such as donepezil are often used in some dementia subtypes and may be beneficial in mild to moderate stages, but the overall benefit may be minor. There are many measures that can improve the quality of life of a person with dementia and their caregivers. Cognitive and behavioral interventions may be appropriate for treating the associated symptoms of depression.
The cognitive symptoms of dementia relate to the area of the brain affected. Typically this includes memory plus one other cognitive region. The most commonly affected areas of brain function include memory, language, attention, problem solving, and visuospatial function affecting perception and orientation. Signs of dementia include getting lost in a familiar neighborhood, using unusual words to refer to familiar objects, forgetting the name of a close family member or friend, forgetting old memories, and being unable to complete tasks independently. People with developing dementia can often fall behind on bill payments; specifically mortgage and credit cards, and a crashing credit score can be an early indicator of the disease. The symptoms progress at a continuous rate over several stages, and they vary across the dementia subtypes. Most types of dementia are slowly progressive with some deterioration of the brain well established before signs of the disorder become apparent.
The behavioral symptoms can include agitation, restlessness, inappropriate behavior, sexual disinhibition, and verbal or physical aggression. Psychological symptoms can include depression, (most often visual), delusions, apathy, and anxiety. Behavioural symptoms in dementia are thought to be often due to unmet needs or untreated physical symptoms. Many of these symptoms may be improved by non-pharmacological measures such as appropriate exercise and empowering carers. Underlying physical causes of distress may also need to be targeted.
Dementias may also produce a number of physical manifestations. These may include changes in gait, falls, repetitive movements, parkinsonism, or seizures. People with dementia are more likely to have problems with incontinence than those of a comparable age without dementia; they are three times more likely to have urinary incontinence and four times more likely to have fecal incontinence. Dementia can also affect the person’s eating and drinking, often causing swallowing issues and weight loss that worsen as the illness progresses to later stages. Pain can also affect people with dementia, potentially as many as 79.6% of people with dementia in nursing homes may experience pain. However pain can be difficult to assess as people with dementia may be unable to communicate this verbally and instead it may manifest as behavioural symptoms.
People with dementia may often have other health conditions present, such as high blood pressure or diabetes, and there can sometimes be as many as four of these Comorbidity. There is also increased prevalence of sarcopenia (muscle loss) and Frailty syndrome among people with dementia.
More detailed descriptions can be arrived at by the use of numeric scales. These scales include:
Using the GDS, which more accurately identifies each stage of the disease progression, a more detailed course is described in seven stages – two of which are broken down further into five and six degrees. Stage 7(f) is the final stage.
Kynurenine is a metabolite of tryptophan that regulates microbiome signaling, immune cell response, and neuronal excitation. A disruption in the kynurenine pathway may be associated with the neuropsychiatric symptoms and cognitive prognosis in mild dementia.
The symptoms of early dementia usually include memory difficulty, but can also include some anomic aphasia, and problems with executive functions of planning and organization. Managing finances may prove difficult. Other signs might be getting lost in new places, repeating things, and personality changes.
In some types of dementia, such as dementia with Lewy bodies and frontotemporal dementia, personality changes and difficulty with organization and planning may be the first signs.
Changes in eating frequently occur. Cognitive awareness is needed for eating and swallowing and progressive cognitive decline results in eating and swallowing difficulties. This can cause food to be refused, or choked on, and help with feeding will often be required. For ease of feeding, food may be liquidized into a thick purée. They may also struggle to walk, particularly among those with Alzheimer's disease. In some cases, terminal lucidity, a form of paradoxical lucidity, occurs immediately before death; in this phenomenon, there is an unexpected recovery of mental clarity.
The part of the brain most affected by Alzheimer's is the hippocampus. Other parts that show atrophy (shrinking) include the Temporal lobe and . Although this pattern of brain shrinkage suggests Alzheimer's, it is variable and a brain scan is insufficient for a diagnosis.
Little is known about the events that occur during and that actually cause Alzheimer's disease. This is due to the fact that, historically, brain tissue from people with the disease could only be studied after the person's death. Brain scans can now help diagnose and distinguish between different kinds of dementia and show severity. These include magnetic resonance imaging (MRI), computerized tomography (CT), and positron emission tomography (PET). However, it is known that one of the first aspects of Alzheimer's disease is overproduction of amyloid. Extracellular senile plaques (SPs), consisting of beta-amyloid (Aβ) peptides, and intracellular neurofibrillary tangles (NFTs) that are formed by hyperphosphorylated tau proteins, are two well-established pathological hallmarks of AD. Amyloid causes inflammation around the Amyloid plaques, and too much buildup of this inflammation leads to changes in the brain that cannot be controlled, leading to the symptoms of Alzheimer's.
Several articles have been published on a possible relationship (as an either primary cause or exacerbation of Alzheimer's disease) between general anesthesia and Alzheimer's in specifically the elderly.
Neuroimaging may show evidence of multiple strokes of different sizes in various locations. People with vascular dementia tend to have risk factors for vascular disease, such as tobacco use, high blood pressure, atrial fibrillation, high cholesterol, diabetes, or other signs of vascular disease such as a previous heart attack or angina.
Two types of FTD feature aphasia (language problems) as the main symptom. One type is called semantic variant primary progressive aphasia (SV-PPA). The main feature of this is the loss of the meaning of words. It may begin with difficulty naming things. The person eventually may lose the meaning of objects as well. For example, a drawing of a bird, dog, and an airplane in someone with FTD may all appear almost the same. In a classic test for this, a person is shown a picture of a pyramid and below it a picture of both a palm tree and a pine tree. The person is asked to say which one goes best with the pyramid. In SV-PPA the person cannot answer that question. The other type is called non-fluent agrammatic variant primary progressive aphasia (NFA-PPA). This is mainly a problem with producing speech. They have trouble finding the right words, but mostly they have a difficulty coordinating the muscles they need to speak. Eventually, someone with NFA-PPA only uses one-syllable words or may become totally mute.
A frontotemporal dementia associated with amyotrophic lateral sclerosis (ALS) known as (FTD-ALS) includes the symptoms of FTD (behavior, language and movement problems) co-occurring with amyotrophic lateral sclerosis (loss of motor neurons). Two FTD-related disorders are progressive supranuclear palsy (also classed as a Parkinson-plus syndrome), and corticobasal degeneration. These disorders are tau-associated.
The first main symptoms of Huntington's disease often include:
Diagnosis of mixed dementia can be difficult, as often only one type will predominate. This makes the treatment of people with mixed dementia uncommon, with many people missing out on potentially helpful treatments. Mixed dementia can mean that symptoms onset earlier, and worsen more quickly since more parts of the brain will be affected.
Celiac disease does not seem to raise the risk of dementia in general but it may increase the risk of vascular dementia. Both celiac disease or non-celiac gluten sensitivity might raise the risk of cognitive impairment which can be one of the early signs of subsequent dementia. A strict gluten-free diet started early may protect against dementia associated with gluten-related disorders.
Cases of easily reversible dementia include hypothyroidism, vitamin B12 deficiency, Lyme disease, and neurosyphilis. For Lyme disease and neurosyphilis, testing should be done if risk factors are present. Because risk factors are often difficult to determine, testing for neurosyphilis and Lyme disease, as well as other mentioned factors, may be undertaken as a matter of course where dementia is suspected.
Many other medical and neurological conditions include dementia only late in the illness. For example, a proportion of people with Parkinson's disease develop dementia, though widely varying figures are quoted for this proportion. When dementia occurs in Parkinson's disease, the underlying cause may be dementia with Lewy bodies or Alzheimer's disease, or both. Cognitive impairment also occurs in the Parkinson-plus syndromes of progressive supranuclear palsy and corticobasal degeneration (and the same underlying pathology may cause the clinical syndromes of frontotemporal lobar degeneration). Although the acute may cause episodes of confusion and psychiatric disturbance, dementia is a rare feature of these rare diseases. Limbic-predominant age-related TDP-43 encephalopathy (LATE) is a type of dementia that primarily affects people in their 80s or 90s and in which TDP-43 protein deposits in the limbic portion of the brain.
Hereditary disorders that can also cause dementia include: some metabolic disorders such as lysosomal storage disorders, leukodystrophies, and spinocerebellar ataxias.
Persistent loneliness may significantly increase the risk of dementia. Loneliness is associated with a 31% higher likelihood of developing any form of dementia, and can also raise the risk of cognitive impairment by 15%.
Normally, symptoms must be present for at least six months to support a diagnosis. Cognitive dysfunction of shorter duration is called delirium. Delirium can be easily confused with dementia due to similar symptoms. Delirium is characterized by a sudden onset, fluctuating course, a short duration (often lasting from hours to weeks), and is primarily related to a somatic (or medical) disturbance. In comparison, dementia has typically a long, slow onset (except in the cases of a stroke or trauma), slow decline of mental functioning, as well as a longer trajectory (from months to years).
Some mental illnesses, including depression and psychosis, may produce symptoms that must be differentiated from both delirium and dementia. These are differently diagnosed as , and any dementia evaluation needs to include a depression screening such as the Neuropsychiatric Inventory or the Geriatric Depression Scale. Physicians used to think that people with memory complaints had depression and not dementia (as they thought that those with dementia are generally unaware of their memory problems). However, researchers have since realized that many older people with memory complaints in fact have mild cognitive impairment, the earliest stage of dementia. Depression should always remain high on the list of possibilities, however, for an elderly person with memory trouble. Changes in thinking, hearing and vision are associated with normal ageing and can cause problems when diagnosing dementia due to the similarities.
Various brief (5–15 minutes) have reasonable reliability to screen for dementia, but may be affected by factors such as age, education and ethnicity. Age and education have a significant influence on the diagnosis of dementia. For example, Individuals with lower education are more likely to be diagnosed with dementia than their educated counterparts.Contador, I. et al. (2017) "
Another approach to screening for dementia is to ask an informant (relative or other supporter) to fill out a questionnaire about the person's everyday cognitive functioning. Informant questionnaires provide complementary information to brief cognitive tests. Probably the best known questionnaire of this sort is the Informant Questionnaire on Cognitive Decline in the Elderly (IQCODE). Evidence is insufficient to determine how accurate the IQCODE is for diagnosing or predicting dementia. The Alzheimer's Disease Caregiver Questionnaire is another tool. It is about 90% accurate for Alzheimer's when by a caregiver. The General Practitioner Assessment Of Cognition combines both a patient assessment and an informant interview. It was specifically designed for use in the primary care setting.
Clinical neuropsychologists provide diagnostic consultation following administration of a full battery of cognitive testing, often lasting several hours, to determine functional patterns of decline associated with varying types of dementia. Tests of memory, executive function, processing speed, attention and language skills are relevant, as well as tests of emotional and psychological adjustment. These tests assist with ruling out other etiologies and determining relative cognitive decline over time or from estimates of prior cognitive abilities.
The functional neuroimaging modalities of SPECT and PET are more useful in assessing long-standing cognitive dysfunction, since they have shown similar ability to diagnose dementia as a clinical exam and cognitive testing. The ability of SPECT to differentiate vascular dementia from Alzheimer's disease, appears superior to differentiation by clinical exam.
The value of PiB-PET imaging using Pittsburgh compound B (PiB) as a radiotracer has been established in predictive diagnosis, particularly Alzheimer's disease.
In addition to the above risk factors, other psychological features, including certain personality traits (high neuroticism, and low conscientiousness), low purpose in life, and high loneliness, are risk factors for Alzheimer's disease and related dementias. For example, based on the English Longitudinal Study of Ageing (ELSA), research found that loneliness in older people can increase the risk of dementia by one-third. Not having a partner (being single, divorced, or widowed) can double the risk of dementia. However, having two or three closer relationships might reduce the risk by three-fifths.
The two most modifiable risk factors for dementia are physical inactivity and lack of cognitive stimulation. Physical activity, in particular aerobic exercise, is associated with a reduction in age-related brain tissue loss, and neurotoxic factors thereby preserving brain volume and neuronal integrity. Cognitive activity strengthens neural plasticity and together they help to support cognitive reserve. The neglect of these risk factors diminishes this reserve.
Sensory impairments of vision and hearing are modifiable risk factors for dementia. These impairments may precede the cognitive symptoms of Alzheimer's disease for example, by many years. Hearing loss may lead to social isolation which negatively affects cognition. Social isolation is also identified as a modifiable risk factor. Age-related hearing loss in midlife is linked to cognitive impairment in late life, and is seen as a risk factor for the development of Alzheimer's disease and dementia. Such hearing loss may be caused by a central auditory processing disorder that makes the understanding of speech against background noise difficult. Age-related hearing loss is characterised by slowed central processing of auditory information. Worldwide, mid-life hearing loss may account for around 9% of dementia cases.
Frailty syndrome may increase the risk of cognitive decline, and dementia, and the inverse also holds of cognitive impairment increasing the risk of frailty. Prevention of frailty may help to prevent cognitive decline.
There are no medications that can prevent cognitive decline and dementia. However blood pressure lowering medications might decrease the risk of dementia or cognitive problems by around 0.5%.
Economic disadvantage has been shown to have a strong link to higher dementia prevalence, which cannot yet be fully explained by other risk factors.
The Mediterranean and DASH diet diets are both associated with less cognitive decline. A different approach has been to incorporate elements of both of these diets into one known as the MIND diet. These diets are generally low in saturated fats while providing a good source of carbohydrates, mainly those that help stabilize blood sugar and insulin levels. Raised blood sugar levels over a long time, can damage nerves and cause memory problems if they are not managed. Nutritional factors associated with the proposed diets for reducing dementia risk include unsaturated fatty acids, vitamin E, vitamin C, , vitamin B, and vitamin D. A study conducted at the University of Exeter in the United Kingdom seems to have confirmed these findings with fruits, vegetables, whole grains, and healthy fats creating an optimum diet that can help reduce the risk of dementia by roughly 25%.
The MIND diet may be more protective but further studies are needed. The Mediterranean diet seems to be more protective against Alzheimer's than DASH but there are no consistent findings against dementia in general. The role of olive oil needs further study as it may be one of the most important components in reducing the risk of cognitive decline and dementia.
In those with celiac disease or non-celiac gluten sensitivity, a strict gluten-free diet may relieve the symptoms given a mild cognitive impairment. Once dementia is advanced no evidence suggests that a gluten-free diet is useful.
Omega-3 fatty acid supplements do not appear to benefit or harm people with mild to moderate symptoms. However, there is good evidence that omega-3 incorporation into the diet is of benefit in treating depression, a common symptom, and potentially modifiable risk factor for dementia.
Acetylcholinesterase inhibitors are often used early in the disorder course; however, benefit is generally small.
More than half of people with dementia may experience psychological or behavioral symptoms including agitation, sleep problems, aggression, and/or psychosis. Treatment for these symptoms is aimed at reducing the person's distress and keeping the person safe. Treatments other than medication appear to be better for agitation and aggression. Cognitive and behavioral interventions may be appropriate. Some evidence suggests that education and support for the person with dementia, as well as caregivers and family members, improves outcomes. Exercise programs are beneficial with respect to activities of daily living. As with all brain disorders, some people with dementia could potentially be a danger to themselves or others. Such behavioral symptoms might result in the person being involuntarily admitted to a mental health ward for assessment, care and treatment. However, this is a last resort, and potential alternatives could be considered by family or friends of people with dementia.
Palliative care interventions may lead to improvements in comfort in dying, but it is not yet clear from the evidence how it can be best used to support people dying with advanced dementia and their families.
The effect of therapies can be evaluated for example by assessing agitation using the Cohen-Mansfield Agitation Inventory (CMAI); by assessing mood and engagement with the Menorah Park Engagement Scale (MPES); and the Observed Emotion Rating Scale (OERS) or by assessing indicators for depression using the Cornell Scale for Depression in Dementia (CSDD) or a simplified version thereof.
Often overlooked in treating and managing dementia is the role of the caregiver and what is known about how they can support multiple interventions. Caregivers of people with dementia in nursing homes do not have sufficient tools or clinical guidance for behavioral and psychological symptoms of dementia (BPSD) along with medication use. Simple measures like talking to people about their interests can improve the quality of life for Nursing home residents living with dementia. A programme showed that such simple measures reduced residents' agitation and depression. They also needed fewer GP visits and hospital admissions, which also meant that the programme was cost-saving.
Adult daycare centers as well as special care units in nursing homes often provide specialized care for dementia patients. Daycare centers offer supervision, recreation, meals, and limited health care to participants, as well as providing respite for caregivers. In addition, home care can provide one-to-one support and care in the home allowing for more individualized attention that is needed as the disorder progresses. Psychiatric nurses can make a distinctive contribution to people's mental health.
Since dementia impairs normal communication due to changes in receptive and expressive language, as well as the ability to plan and problem solve, agitated behavior is often a form of communication for the person with dementia. Actively searching for a potential cause, such as pain, physical illness, or overstimulation can be helpful in reducing agitation. Additionally, using an "ABC analysis of behavior" can be a useful tool for understanding behavior in people with dementia. It involves looking at the antecedents (A), behavior (B), and consequences (C) associated with an event to help define the problem and prevent further incidents that may arise if the person's needs are misunderstood. The strongest evidence for non-pharmacological therapies for the management of changed behaviors in dementia is for using such approaches. Low quality evidence suggests that regular (at least five sessions of) music therapy may help institutionalized residents. It may reduce depressive symptoms and improve overall behaviors. It may also supply a beneficial effect on emotional well-being and quality of life, as well as reduce anxiety. In 2003, The Alzheimer's Society established 'Singing for the Brain' (SftB) a project based on pilot studies which suggested that the activity encouraged participation and facilitated the learning of new songs. The sessions combine aspects of reminiscence therapy and music. Musical and interpersonal connectedness can underscore the value of the person and improve quality of life.
Some London hospitals found that using color, designs, pictures and lights helped people with dementia adjust to being at the hospital. These adjustments to the layout of the dementia wings at these hospitals helped patients by preventing confusion.
Life story work as part of reminiscence therapy, and video biographies have been found to address the needs of clients and their caregivers in various ways, offering the client the opportunity to leave a legacy and enhance their personhood and also benefitting youth who participate in such work. Such interventions can be more beneficial when undertaken at a relatively early stage of dementia. They may also be problematic in those who have difficulties in processing past experiences
Animal-assisted therapy has been found to be helpful. Drawbacks may be that pets are not always welcomed in a communal space in the care setting. An animal may pose a risk to residents, or may be perceived to be dangerous. Certain animals may also be regarded as "unclean" or "dangerous" by some cultural groups.
Occupational therapy also addresses psychological and psychosocial needs of patients with dementia through improving daily occupational performance and caregivers' competence. When compensatory intervention strategies are added to their daily routine, the level of performance is enhanced and reduces the burden commonly placed on their caregivers. Occupational therapists can also work with other disciplines to create a client centered intervention. To manage cognitive disability, and coping with behavioral and psychological symptoms of dementia, combined occupational and behavioral therapies can support patients with dementia even further.
Acetylcholinesterase inhibitors, such as donepezil, may be useful for Alzheimer's disease, Parkinson's disease dementia, DLB, or vascular dementia. The quality of the evidence is poor and the benefit is small. No difference has been shown between the agents in this family. In a minority of people side effects include a slow heart rate and fainting. Rivastigmine is recommended for treating symptoms in Parkinson's disease dementia.
Medications that have anticholinergic effects increase all-cause mortality in people with dementia, although the effect of these medications on cognitive function remains uncertain, according to a systematic review published in 2021.
Before prescribing antipsychotic medication in the elderly, an assessment for an underlying cause of the behavior is needed. Severe and life-threatening reactions occur in almost half of people with DLB, and can be fatal after a single dose. People with Lewy body dementias who take neuroleptics are at risk for neuroleptic malignant syndrome, a life-threatening illness. Extreme caution is required in the use of antipsychotic medication in people with DLB because of their sensitivity to these agents. Antipsychotic drugs are used to treat dementia only if non-drug therapies have not worked, and the person's actions threaten themselves or others. Aggressive behavior changes are sometimes the result of other solvable problems, that could make treatment with antipsychotics unnecessary. Because people with dementia can be aggressive, resistant to their treatment, and otherwise disruptive, sometimes antipsychotic drugs are considered as a therapy in response. These drugs have risky adverse effects, including increasing the person's chance of stroke and death. Given these adverse events and small benefit antipsychotics are avoided whenever possible. Generally, stopping antipsychotics for people with dementia does not cause problems, even in those who have been on them a long time.
NMDA receptor blockers such as memantine may be of benefit but the evidence is less conclusive than for AChEIs. Due to their differing mechanisms of action memantine and acetylcholinesterase inhibitors can be used in combination however the benefit is slight.
An extract of Ginkgo biloba known as EGb 761 has been widely used for treating mild to moderate dementia and other neuropsychiatric disorders. Its use is approved throughout Europe. The World Federation of Biological Psychiatry guidelines lists EGb 761 with the same weight of evidence (level B) given to acetylcholinesterase inhibitors, and memantine. EGb 761 is the only one that showed improvement of symptoms in both AD and vascular dementia. EGb 761 is seen as being able to play an important role either on its own or as an add-on particularly when other therapies prove ineffective. EGb 761 is seen to be neuroprotective; it is a free radical scavenger, improves mitochondrial function, and modulates serotonin and dopamine levels. Many studies of its use in mild to moderate dementia have shown it to significantly improve cognitive function, activities of daily living, neuropsychiatric symptoms, and quality of life. However, its use has not been shown to prevent the progression of dementia.
While depression is frequently associated with dementia, the use of such as selective serotonin reuptake inhibitors (SSRIs) do not appear to affect outcomes. However, the SSRIs sertraline and citalopram have been demonstrated to reduce symptoms of agitation, compared to placebo.
No solid evidence indicates that folate or vitamin B12 improves outcomes in those with cognitive problems. Statins have no benefit in dementia. Medications for other health conditions may need to be managed differently for a person who has a dementia diagnosis. It is unclear whether blood pressure medication and dementia are linked. People may experience an increase in cardiovascular-related events if these medications are withdrawn.
The MATCH-D (MATCH-D) criteria can help identify ways that a diagnosis of dementia changes medication management for other health conditions. These criteria were developed because people with dementia live with an average of five other chronic diseases, which are often managed with medications. The systematic review that informed the criteria were published subsequently in 2018 and in 2022.
Because there is uncertainty around how and when people with dementia decline, and because most people prefer to allow the person with dementia to make their own decisions, palliative care involvement before the late stages of dementia is recommended. For example, in England, it is estimated that 40% of people at any stage of dementia would benefit from palliative care. This proportion of people is expected to increase dramatically by 2040.
In the early stages of dementia, palliative care can involve advocacy around establishing goals of care in the future, reassurance of continued support, planning for future scenarios of care and establishing long-term relationships with care providers. In later stages, a palliative approach to dementia care may have specific benefit to goals of care and end-of-life conversations, symptom management, prescribing practices and emergency department visits. However, more research is needed to know how palliative care can be best used to support people dying with advanced dementia and their families.
Towards the end of life, people with dementia frequently present to the emergency department with unmet palliative care needs. Community palliative care is associated with the reduced likelihood of attending the emergency department among people with dementia nearing the end of life. Palliative care for people with dementia living at home may help improve end-of-life care outcomes such as neuropsychiatric symptoms.
People with advanced dementia may not readily receive specialist palliative care input. Reasons for this are varied but may include lack of agreement of when to refer people with dementia, and a lack of coordination across care settings, communication challenges, limited training opportunities for healthcare staff and because dementia is not considered to be a life-limiting condition. In fact, people with dementia and their carers and members of the public often don't know that dementia is not a normal part of aging and that it is a terminal condition.
Further research is needed to determine the appropriate palliative care interventions and how they can be implemented to help people with dementia.
Person-centered care interventions could not only reduce agitation, neuropsychiatric symptoms, and depression but also help improve the quality of life for people with dementia. Moreover, the potential benefits of a person-centered care approach for dementia care workers have been reported, indicating its effectiveness in reducing stress, burnout, and job dissatisfaction.
PCOMs can be single-domain or multi-domain tools, focussing on individual symptoms or multiple symptoms, depending on the scope of assessment. Single-domain PCOMs focus on one specific area of care. For example, the Pain Assessment in Advanced Dementia (PAINAD) scale is used to assess pain in individuals living with advanced dementia. Multi-domain PCOMs could assess multiple domains, including the symptom burden, function, psychological or spiritual problems, treatment satisfaction, health-related quality of life. The Integrated Palliative Care Outcome Scale for Dementia (IPOS-Dem) is an example of a comprehensive palliative dementia PCOM, used to measure symptoms and concerns for people with dementia.
Non-pharmacological approaches have been suggested for treating sleep problems for those with dementia, however, there is no strong evidence or firm conclusions on the effectiveness of different types of interventions, especially for those who are living in an institutionalized setting such as a nursing home or long-term care home.
Although persistent pain in people with dementia is difficult to communicate, diagnose, and treat, failure to address persistent pain has profound functional, psychosocial and quality of life implications for this vulnerable population. Health professionals often lack the skills and usually lack the time needed to recognize, accurately assess and adequately monitor pain in people with dementia. Family members and friends can make a valuable contribution to the care of a person with dementia by learning to recognize and assess their pain. Educational resources and observational assessment tools are available.
Benefits in those with advanced dementia has not been shown. The risks of using tube feeding include agitation, rejection by the person (pulling out the tube, or otherwise physical or chemical immobilization to prevent them from doing this), or developing pressure ulcers. The procedure is directly related to a 1% fatality rate with a 3% major complication rate. The percentage of people at end of life with dementia using feeding tubes in the US has dropped from 12% in 2000 to 6% as of 2014.
The immediate and long-term effects of modifying the thickness of fluids for swallowing difficulties in people with dementia are not well known. While thickening fluids may have an immediate positive effect on swallowing and improving oral intake, the long-term impact on the health of the person with dementia should also be considered.
Technology has the potential to be a valuable intervention for alleviating loneliness and promoting social connections. It could facilitate activities of daily living, and provide ways to connect people that are geographically distant.
Other types of developed technologies to aid services include Telehealth services, using digital communication for delivery of health-related services and information through phone calls, mobile apps, and video conferencing.
Telemedicine has given results for cognitive assessment and diagnosis that are similar to in-person visits, and it has also helped improve outcomes after rehabilitation. Telemedicine is often well received by people affected by dementia who can rely on the support of staff and family to navigate the technology. While it has potential to widen access to services, those with sensory impairment may be excluded.
Digital health interventions can play a role in supporting family caregivers of people with dementia, by offering a source of support from connective platforms, with 24/7 accessibility, as well as opportunity for remote monitoring. However, challenges such as the digital divide, privacy concerns and the need for greater personalisation for individual users are recognised issues.
In several localities in Japan, digital surveillance may be made available to family members, if a person with dementia is prone to wandering and going missing.
Around 7% of people over the age of 65 have dementia, with slightly higher rates (up to 10% of those over 65) in places with relatively high life expectancy. An estimated 58% of people with dementia are living in low and middle income countries.
The prevalence of dementia differs in different world regions, ranging from 4.7% in Central Europe to 8.7% in North Africa/Middle East; the prevalence in other regions is estimated to be between 5.6 and 7.6%. The number of people living with dementia is estimated to double every 20 years. In 2016 dementia resulted in about 2.4 million deaths, up from 0.8 million in 1990.
Estimates show that in 2024 there were 982,000 people living with dementia in the UK and this is expected to rise to 1.4 million people by 2040.
The annual incidence of dementia diagnosis is nearly 10 million worldwide. Almost half of new dementia cases occur in Asia, followed by Europe (25%), the Americas (18%) and Africa (8%). The incidence of dementia increases exponentially with age, doubling with every 6.3-year increase in age. Dementia affects 5% of the population older than 65 and 20–40% of those older than 85.
In 2019, there were 1.62 million dementia-related deaths worldwide. This is expected to increase to 4.91 million by 2050.
In 2022 and 2023, dementia was the leading cause of death in England and Wales.
Deaths from dementia in the U.S. have tripled in the past 21 years, rising from around 150,000 in 1999 to over 450,000 in 2020, and the likelihood of dying from dementia increased across all demographic groups.
The genetic and environmental risk factors for dementia disorders vary by ethnicity. For instance, Alzheimer's disease among Hispanic/Latino and African American subjects exhibit lower risks associated with gene changes in the apolipoprotein E gene than do non-Hispanic white subjects.
In the United States in 2017, over 37% of dementia cases in the United States were associated with cardiometabolic conditions, though the risk varies across regions. The eight key contributors were diabetes, heart failure, atrial fibrillation, coronary artery disease, heart attacks, Stroke, hypertension and high cholesterol. Among these, stroke was the most significant factor, doubling the risk of developing dementia (2.2 times higher), followed closely by heart failure (2.1 times) and hypertension (78% increased risk). In contrast, high cholesterol had the weakest correlation, associated with a 27% increased risk. However, there were also geographic disparities, and individuals living in the U.S. South faced a higher likelihood of dementia related to cardiovascular conditions and diabetes.
Less than 1% of those with Alzheimer's have gene mutations that cause a much earlier development of the disease, around the age of 45, known as early-onset Alzheimer's disease. More than 95% of people with Alzheimer's disease have the sporadic form (late onset, 80–90 years of age).
People with dementia are often physically or chemically restrained to a greater degree than necessary, raising issues of human rights. Social stigma is commonly perceived by those with the condition, and also by their caregivers.
Post-diagnostic care is often variable and difficult to navigate, with a disparity in care between dementia and other life-limiting conditions. Furthermore, substantially less dementia research funding and financial support for the care of people with dementia compared to other life-limiting conditions also exists.
Differences in access to high-quality care among dementia subtypes are also noted. People with rare types of dementia compared to those with Alzheimer’s Disease, and those with other physical conditions are less likely to experience high-quality care.
There are significant advantages associated with having a timely dementia diagnosis (i.e., receiving the diagnosis at the milder stages of the condition). However, access to dementia diagnosis can be inequitable. Compared to individuals with high socioeconomic status, those with low socioeconomic status can have more than three-times higher risk of early-onset dementia. Additionally, individuals of low socioeconomic status with unhealthy lifestyles, can have 440% greater risk of developing early-onset dementia compared with individuals of high socioeconomic status with healthy lifestyles. Measures to improve social determinants of health are warranted, as healthy lifestyle promotion alone might not substantially reduce the socioeconomic inequity in early-onset dementia and late-onset dementia risk.
People with dementia residing in rural areas often experience challenges in receiving a timely diagnosis and accessing health and social care compared to people living in urban areas.
Among older people diagnosed with dementia, those from most deprived areas can be more likely to experience hospitalisations, emergency department visits, potentially inappropriate medication prescriptions, and higher 1-year mortality. People living in the most deprived areas are more likely to experience multiple hospitalisations in the last three months of life and emergency department visits in the last year of life. In high-income countries, low socioeconomic position is a risk factor for dying in hospital as well as other indicators of potentially poor-quality end-of-life care.
Athenian philosophers Aristotle and Plato discussed the mental decline that can come with old age and predicted that this affects everyone who becomes old and nothing can be done to stop this decline from taking place. Plato specifically talked about how the elderly should not be in positions that require responsibility because, "There is not much acumen of the mind that once carried them in their youth, those characteristics one would call judgement, imagination, power of reasoning, and memory. They see them gradually blunted by deterioration and can hardly fulfill their function."
For comparison, the Roman statesman Cicero held a view much more in line with modern-day medical wisdom that loss of mental function was not inevitable in the elderly and "affected only those old men who were weak-willed". He spoke of how those who remained mentally active and eager to learn new things could stave off dementia. However, Cicero's views on aging, although progressive, were largely ignored in a world that would be dominated for centuries by Aristotle's medical writings. Physicians during the Roman Empire, such as Galen and Celsus, simply repeated the beliefs of Aristotle while adding few new contributions to medical knowledge.
Byzantine Empire physicians sometimes wrote of dementia. It is recorded that at least seven emperors whose lifespans exceeded 70 years displayed signs of cognitive decline. In Constantinople, special hospitals housed those diagnosed with dementia or insanity, but these did not apply to the emperors, who were above the law and whose health conditions could not be publicly acknowledged.
Otherwise, little is recorded about dementia in Western medical texts for nearly 1700 years. One of the few references was the 13th-century friar Roger Bacon, who viewed old age as divine punishment for original sin. Although he repeated existing Aristotelian beliefs that dementia was inevitable, he did make the progressive assertion that the brain was the center of memory and thought rather than the heart.
Poets, playwrights, and other writers made frequent allusions to the loss of mental function in old age. William Shakespeare notably mentions it in plays such as Hamlet and King Lear.
During the 19th century, doctors generally came to believe that elderly dementia was the result of cerebral atherosclerosis, although opinions fluctuated between the idea that it was due to blockage of the major arteries supplying the brain or small strokes within the vessels of the cerebral cortex.
In 1907, Bavarian psychiatrist Alois Alzheimer was the first to identify and describe the characteristics of progressive dementia in the brain of 51-year-old Auguste Deter.Zilka, N., & Novak, M. (2006). The tangled story of Alois Alzheimer. Bratislavske lekarske listy, 107(9–10), 343–345. Deter had begun to behave uncharacteristically, including accusing her husband of adultery, neglecting household chores, exhibiting difficulties writing and engaging in conversations, heightened insomnia, and loss of directional sense. At one point, Deter was reported to have "dragged a bed sheet outside, wandered around wildly, and cried for hours at midnight." Alzheimer began treating Deter when she entered a Frankfurt mental hospital on November 25, 1901. During her ongoing treatment, Deter and her husband struggled to afford the cost of the medical care, and Alzheimer agreed to continue her treatment in exchange for Deter's medical records and donation of her brain upon death. Deter died on April 8, 1906, after succumbing to sepsis and pneumonia. Alzheimer conducted the brain biopsy using the Bielschowsky stain method, which was a new development at the time, and he observed senile plaques, neurofibrillary tangles, and atherosclerotic alteration. At the time, the consensus among medical doctors had been that senile plaques were generally found in older patients, and the occurrence of neurofibrillary tangles was an entirely new observation at the time. Alzheimer presented his findings at the 37th psychiatry conference of southwestern Germany in Tübingen on April 11, 1906; however, the information was poorly received by his peers. By 1910, Alois Alzheimer's teacher, Emil Kraepelin, published a book in which he coined the term "Alzheimer's disease" in an attempt to acknowledge the importance of Alzheimer's discovery.
By the 1960s, the link between neurodegenerative diseases and age-related cognitive decline had become more established. By the 1970s, the medical community maintained that vascular dementia was rarer than previously thought and Alzheimer's disease caused the vast majority of old age mental impairments. More recently however, it is believed that dementia is often a mixture of conditions.
In 1976, neurologist Robert Katzmann suggested a link between senile dementia and Alzheimer's disease. Katzmann suggested that much of the senile dementia occurring (by definition) after the age of 65, was pathologically identical with Alzheimer's disease occurring in people under age 65 and therefore should not be treated differently. Katzmann thus suggested that Alzheimer's disease, if taken to occur over age 65, is actually common, not rare, and was the fourth- or 5th-leading cause of death, even though rarely reported on death certificates in 1976.
A helpful finding was that although the incidence of Alzheimer's disease increased with age (from 5–10% of 75-year-olds to as many as 40–50% of 90-year-olds), no threshold was found by which age all persons developed it. This is shown by documented supercentenarians (people living to 110 or more) who experienced no substantial cognitive impairment. Some evidence suggests that dementia is most likely to develop between ages 80 and 84 and individuals who pass that point without being affected have a lower chance of developing it. Women account for a larger percentage of dementia cases than men. This can be attributed in part to their longer overall lifespan and greater odds of attaining an age where the condition is likely to occur.
Much like other diseases associated with aging, dementia was comparatively rare before the 20th century, because few people lived past 80. Conversely, syphilitic dementia was widespread in the developed world until it was largely eradicated by the use of penicillin after World War II. With significant increases in life expectancy thereafter, the number of people over 65 started rapidly climbing. While elderly persons constituted an average of 3–5% of the population prior to 1945, by 2010 many countries reached 10–14% and in Germany and Japan, this figure exceeded 20%. Public awareness of Alzheimer's Disease greatly increased in 1994 when former US president Ronald Reagan announced that he had been diagnosed with the condition.
In the 21st century, other types of dementia were differentiated from Alzheimer's disease and vascular dementias (the most common types). This differentiation is on the basis of pathological examination of brain tissues, by symptomatology, and by different patterns of brain metabolic activity in nuclear medical imaging tests such as SPECT and of the brain. The various forms have differing prognoses and differing epidemiologic risk factors. The main cause for many diseases, including Alzheimer's disease, remains unclear.
By 1913–20 the term dementia praecox was introduced to suggest the development of senile-type dementia at a younger age. Eventually the two terms fused, so that until 1952 physicians used the terms dementia praecox (precocious dementia) and schizophrenia interchangeably. Since then, science has determined that dementia and schizophrenia are two different disorders, though they share some similarities. The term precocious dementia for a mental illness suggested that a type of mental illness like schizophrenia (including paranoia and decreased cognitive capacity) could be expected to arrive normally in all persons with greater age (see paraphrenia). After about 1920, the beginning use of dementia for what is now understood as schizophrenia and senile dementia helped limit the word's meaning to "permanent, irreversible mental deterioration". This began the change to the later use of the term. In recent studies, researchers have seen a connection between those diagnosed with schizophrenia and patients who are diagnosed with dementia, finding a positive correlation between the two diseases.
The view that dementia must always be the result of a particular disease process led for a time to the proposed diagnosis of "senile dementia of the Alzheimer's type" (SDAT) in persons over the age of 65, with "Alzheimer's disease" diagnosed in persons younger than 65 who had the same pathology. Eventually, however, it was agreed that the age limit was artificial, and that Alzheimer's disease was the appropriate term for persons with that particular brain pathology, regardless of age.
After 1952, mental illnesses including schizophrenia were removed from the category of organic brain syndromes, and thus (by definition) removed from possible causes of "dementing illnesses" (dementias). At the same, however, the traditional cause of senile dementia – "hardening of the arteries" – now returned as a set of dementias of vascular cause (small strokes). These were now termed multi-infarct dementias or vascular dementias.
The societal cost of dementia is high, especially for Caregiver. According to research conducted in the UK, almost two out of three carers of people with dementia feel lonely. Most of the carers in the study were family members or friends. Family carers of people with dementia are at higher risk of developing psychological and physical conditions.
In England, according to an economic model, population-level interventions that target risk factors for dementia (such as high blood pressure, smoking and obesity) could save money and give people extra years in good health. For example, reduced salt in food could give 39,433 quality-adjusted life-years and save £2.4 billion.
The global costs of dementia was around US$818 billion in 2015, a 35.4% increase from US$604 billion in 2010. By 2050 the estimated global cost will be $9.12 trillion.
In 2015, the annual cost per person with Alzheimer's in the United States was around $19,144.36. The total costs for the country was estimated to be about $167.74 billion. By 2030, it is predicted the annual socioeconomic cost will total to about $507 billion, and by 2050 that number is expected to reach $1.89 trillion.
The total cost of dementia care in the UK is projected to increase by 172%, from £34.7 billion in 2019 to £94.1 billion in 2040.
The estimated costs of dementia in low- and middle-income countries (LMICs) are lower compared to high-income countries, with indirect costs making up the largest proportion in LMICs. However, these estimates are likely an underrepresentation, as there have been limited research studies on dementia costs in LMICs, particularly low-income countries.
According to Alzheimer’s Disease International’s 2024 survey consisting of more than 40,000 responses from people living with dementia, carers, health and care practitioners, and the general public from over 166 countries and territories, 80% of general public and 65% of health and care professionals incorrectly believe dementia is a normal part of ageing.
Celebrities have used their platforms to raise awareness for the different forms of dementia and the need for further support, including former First Lady of California Maria Shriver, actor Samuel L. Jackson, editor-in-chief of ELLE Magazine Nina Garcia, professional skateboarder Tony Hawk, and others.
Additional Alzheimer's awareness has been raised through the diagnoses of high-profile persons themselves, including actors Bruce Willis and Robin Williams, actress and pin-up model Rita Hayworth, activist Rosa Parks, former US President Ronald Reagan, TV host Wendy Williams, musicians Tony Bennett and Maureen McGovern.
In October 2020, the Caretaker's last music release, Everywhere at the End of Time, was popularized by TikTok users for its depiction of the stages of dementia. Caregivers were in favor of this phenomenon; Leyland Kirby, the creator of the record, echoed this sentiment, explaining it could cause empathy among a younger public.
On November 2, 2020, Scottish billionaire Sir Tom Hunter donated £1 million to dementia charities, after watching a former music teacher with dementia, Paul Harvey, playing one of his own compositions on the piano in a viral video. The donation was announced to be split between the Alzheimer's Society and Music for Dementia.
Diagnosis
Cognitive testing
+Sensitivity and specificity of common tests for dementia MMSE 71–92% 56–96% 3MS 83–93% 85–90% AMTS 73–100% 71–100%
/ref> While many tests have been studied, presently the mini mental state examination (MMSE) is the best studied and most commonly used. The MMSE is a useful tool for helping to diagnose dementia if the results are interpreted along with an assessment of a person's personality, their ability to perform activities of daily living, and their behaviour. Other cognitive tests include the abbreviated mental test score (AMTS), the, "modified mini–mental state examination" (3MS), the Cognitive Abilities Screening Instrument (CASI), the Trail-making test, and the clock drawing test. The MoCA (Montreal Cognitive Assessment) is a reliable screening test and is available online for free in 35 different languages. The MoCA has also been shown somewhat better at detecting mild cognitive impairment than the MMSE. People with hearing loss, which commonly occurs alongside dementia, score worse in the MoCA test, which could lead to a false diagnosis of dementia. Researchers have developed an adapted version of the MoCA test, which is accurate and reliable and avoids the need for people to listen and respond to questions. The AD-8 – a screening questionnaire used to assess changes in function related to cognitive decline – is potentially useful, but is not diagnostic, is variable, and has risk of bias. An integrated cognitive assessment ( CognICA) is a five-minute test that is highly sensitive to the early stages of dementia, and uses an application deliverable to an iPad. Previously in use in the UK, in 2021 CognICA was given FDA approval for its commercial use as a medical device.
Laboratory tests
Imaging
Prevention
Risk factors
Dental health
Oral bacteria
Oral viruses
Diet
Management
Psychological and psychosocial therapies
Cognitive training and rehabilitation
Personally tailored activities
Medications
Palliative care
Person-centered care
Person centered assessment
Sleep disturbances
Pain
Eating difficulties
Exercise
Assistive technology and digital health
Remotely delivered information for caregivers
Alternative medicine
Epidemiology
Affected ages
Inequities and inequalities
Socioeconomic status and deprivation
Race and ethnicity
Gender
History
Terminology
Society and culture
National policies on dementia
Financial costs
Awareness
Philanthropy
Other
Research directions
Diagnosis
Notes
Further reading
External links
target="_blank" rel="nofollow"> National Institute on Aging – Alzheimer's disease
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