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Understanding Dementia

December 22, 2021

Improving the support for people with dementia and looking after yourself as a carer.

Understanding dementia.

Dementia is a general term for loss of memory, language, problem-solving, and other brain functions. There are over 100 diseases that may cause dementia.

Dementia is not a complete diagnosis.  It is important to know what the type of dementia is, such as Alzheimer’s Disease or Vascular Dementia, in order to understand the cause, the progression of affected functions, and corresponding therapies (pharmacological and non-pharmacological) that can help slow the disease and retain abilities for longer.

Dementia affects people in different ways. Cognitive, personality, and behavioural changes vary according to the type of dementia, to the stage of disease (mild, moderate, or severe), and from person to person.

A diagnosis is not the end. Although dementia can still be stigmatised, awarness, understanding, and concrete support is advancing, for example dementia-friendly customer-service organizations and caretaker support. People with dementia may live full lives for years.

Understanding, preparing, and improving the support that people and their caretakers have from the point of diagnosis and throughout the condition is important to respond and manage this disease that affects the person diagnosed and their loved ones.

Recognizing that you are a carer.

Sometimes people do not recognize that they are carers, despite supporting people very intensively. For others, it might be a new role to take on that has not been experienced or seen before.

Not identifying as a carer can have implications on accessing support. For example, as a carer one can access respite services to gain to perform other activities – and help carry on caring.

Knowing that one is a carer also means recognizing that one is not alone. In the United States, it is reported that 1 in 5 Americans are caregivers, providing care to an adult or child with special needs in 2020. Across the United Kingdom, 6.5 million people are carers, supporting a loved one who is older, disabled or seriously ill; and every day another 6,000 people take on a caring responsibility. A vast majority of these are providing unpaid care.  In Hong Kong, it is estimated that in 2018, 5% of the population received eldercare, either at home or residential and that45,000 working adults were providing eldercare for a family member, with 58% of these being women.

Although caring can have many positive and rewarding aspects, there are many reasons why caring can have an impact on day-to-day life and why caretakers may need support. These can be attending emotional support groups and activities, accessing training, considering flexible arrangements at work or socially, and finding out about financial entitlements and social resources. These things may be uncovered following a needs assessment and carer’s assessment.

Early intervention and preparation are important. Relationships will change and acknowledging how these will affect caregivers and others is important. Besides allowing one to put affairs in order – like legal, financial, and medical wishes – it also helps to establish connections between informal and formal support. For example, one person may be the primary carer but there may also be secondary and third carers who can get involved in support at home and other activities. Open conversations and involving dementia caregiving specialists can help families identify what each family member can provide to support the person, but equally each other.

There are at least 55 million people living with dementia around the world as reported by the World Health Organization in 2021, and nearly 10 million new cases every year. Associations for dementia and other recognized organizations are trusted resources for information, education, referral, and support.

It is ok – and smart – to ask for help and understand what is going on for oneself, as well as the person being cared for.

Types of dementia.

Dementia is triggered by damage to brain cells and their ability to communicate with each other. Different regions of the brain are responsible for unique functions. When neural cells and pathways are damaged, thinking, movement, behaviour and/or emotions are affected.

Different types of dementia are associated with particular types of brain cell damage in particular regions of the brain.

Alzheimer’s disease is the most common type of dementia, accounting for 60-70% of cases. The second most common cause is Vascular Dementia. Frontotemporal Degeneration and Lewy Body dementia are also frequent types. It is also possible to have more than one disease causing dementia, known as mixed dementia.

Dementia is more common in people over 65 but it can affect younger people too. Early-onset dementia is the term used when early signs present in the 30s, 40s, or 50s.

Although most changes in the brain that cause dementia are permanent and worsen over time, it is possible to address dementia-like symptoms caused by depression, excess use of alcohol, thyroid problems, medication side effects, brain tumours, stress, hormone disorders, urinary infection, nutritional or vitamin deficiencies.

Know the signs.

Since the start of the coronavirus pandemic, social isolation has increased. It is feared that this may increase the numbers of people suffering from dementia, or that problems that have been going on for some time, were made worse and are only now being noticed.

Sometimes it is family or close friends who first identify consistent changes. However, sometimes when people see each other continuously they can miss changes, which may be more salient to people with less regular contact.

It is not easy to spot early signs of dementia. Changes are gradual and not always obvious. Because dementia affects people in different ways, not all the signs associated with dementia may be present. Failure to recognise signs in the early stages often lead to people not being diagnosed for several years.

Common early signs include:

  • memory loss that affects day-to-day function.
  • struggling to recall things heard, seen, or read recently – although you can easily recall things from longer ago.
  • regularly losing the thread when speaking.
  • difficulties in thinking or saying the right words.
  • finding it difficult to follow conversations or programs on TV.
  • difficulty performing everyday tasks and taking longer to do routine tasks.
  • putting objects in unusual places, like the keys in the fridge.
  • feeling confused, even in a familiar place, or getting lost on familiar journeys.
  • losing enthusiasm or interest in activities and becoming apathetic.
  • communication problems that can lead to withdrawal from support networks.
  • problems with judgement.
  • changes in personality or behaviour.
  • finding it difficult to follow instructions.
  • increased emotional unpredictability.

If someone is showing these symptoms, encourage them to see their doctor and investigate the cause. Although it may not be dementia, it is always good to check what is going on.

Primary physicians should refer people to a memory clinic or specialists, such as neurologists, geriatric specialists, or psychiatrists, for further assessments. Other doctors may also be involved in order to rule out issues, like strokes and tumours.

Do not self-diagnose. There are a lot of conditions that can provoke symptoms similar to dementia.

Mild cognitive impairment.

Memory problems do not always mean dementia. Although ageing is a risk factor, serious mental decline and dementia are not an inevitable consequence of ageing. There is a difference between normal memory loss, mild cognitive impairment, and dementia.

Not all mild cognitive impairment (MCI) will lead to dementia, but it can do so. Because MCI can be an early sign of more serious problems it is important to see a doctor or specialist who can help track changes in memory or thinking skills. Keeping a record of changes can also be useful.

Symptoms may become severe, but they can also stay the same or even improve. People with MCI may also consider participating in clinical trials.

Diagnosing dementia.

There is no single test to determine if someone has dementia, so doctors will perform tests looking at memory and mental abilities, brain imaging (through magnetic resonance imaging, or MRI, or computed tomography or CT), and physical examinations to arrive at a complete diagnosis.

Doctors can determine that a person has dementia with a high level of certainty. But it is harder to determine the exact type of dementia because the symptoms and brain changes of different dementias can overlap. In some cases, a doctor may diagnose “dementia” and not specify a type. If this occurs, it may be necessary to see a specialist such as a neurologist, psychiatrist, psychologist, or geriatrician.

The most common cognitive tests are the Mini-Mental State Exam and Mini-Cog test. Some physicians may also use computer-based tests.

Neuropsychologists usually provide more comprehensive mental cognitive status tests to evaluate executive function, judgement, attention, and language.

Therapies and treatments.

While there is currently no cure for dementia, doctors may prescribe drugs that help reduce mental and functional declines or relieve symptoms.

Cognitive therapies led by professionals can help. So can music therapy.

After a diagnosis, learn about:

  • changes in relationships
  • taking care of your physical, emotional, social, and spiritual health
  • taking steps to reduce stress and improve your wellbeing
  • coping strategies and tips for managing day-to-day life – starting with acceptance and using technology, lists or sticky notes, to using photos over the years and life stories to help recognise family and friends, wearing the same colour shirts and your caregiver to find them in crowded space, and making the home a more safe environment
  • helping family and friends adjust to a diagnosis
  • understanding and challenging stigma and cultivating improved awareness of difficulties
  • planning for the future
  • leaving your legacy

 

Sources:

  1. AARP, National Alliance for Caregiving. 14 May 2020. “Caregiving in the United States 2020”.
  2. Carers UK.
  3. HSBC Life, The Women’s Foundation, and Sau Po Centre on Ageing The University of Hong Kong. May 2019. “Eldercare Hong Kong. The Projected Societal Cost of Eldercare in Hong Kong 2018 to 2060.”
  4. Alzheimer’s Association.
  5. Alzheimer’s Society.
  6. Dementia Australia.