Dementia Care: A Helpful Guide (2018)
What is Dementia?
Dementia is damage to the cerebral cortex in part of the brain responsible for cognition and memory.
The damage becomes more prevalent over time, meaning that the symptoms of dementia also worsen over time.
Dementia is highly individualised, depending on the type of dementia suffered, as well as the progression of the illness. As such, the signs and symptoms of the condition can vary from person to person.
Dementia in the UK
Sadly in 2015, 61,000 people died of dementia, with women affected at a rate double to that of men.
Unfortunately, no one survives its diagnosis. Today, about 850,000 people in the UK are living with the condition, which is not an inevitable part of ageing.
Instead, it is a disease that needs research efforts to fully understand and combat it.
Types of Dementia
The term “dementia” is a comprehensive term used to describe several neurological disorders with similar characteristics. While over 100 types of dementia have been identified, Alzheimer’s is probably the most common type of dementia. Different dementias affect different parts of the brain, such as the processing areas for memory or speech. For example, Alzheimer’s patients have trouble with orientation (knowing where they are) of place and time. Alzheimer’s is one of four main dementia types.
About Alzheimer’s Disease
The majority of people (60%) who have dementia also have Alzheimer’s disease. It is by far the most common form of dementia, particularly in people over age 65. Alzheimer’s disease is a progressive illness in which the person does get progressively worse over time.
Although the exact cause is unknown, current research states that problematic protein deposits called ‘plaques’ and ‘tangles’ form in the brain. Plaques are formed by amyloid proteins. These proteins naturally occur in the brain but begin to malfunction for reasons not yet understood. The natural amyloid turns into a toxic substance called beta-amyloid which affects brain cells. As the dead brain cells and beta-amyloid build up, plaques form in the brain.
The tangles are caused by another protein called tau. Like amyloid, tau is also naturally-occurring; it functions as a communications facilitator between brain cells. Also for reasons not yet understood, tau proteins become abnormal. When that happens, the tau clumps together and leads to brain cell death.
Researchers have also discovered that Alzheimer’s patients have less of a brain chemical called acetylcholine, which is a chemical messenger between brain cells. Lack of acetylcholine means that information is not readily or easily communicated between cells.
About Lewy Body Dementia
The form of dementia referred to as Lewy body occurs in people over age 65 and in about 15% of all dementia cases. Like other forms of dementia, this is also a progressive condition characterised by worsening symptoms similar to both Alzheimer’s and Parkinson’s diseases.
People with Lewy body dementia have protein buildups called Lewy bodies that form in brain cells. Over time, the buildup damages nerve cell communication.
About Vascular Dementia
Vascular dementia occurs slightly more frequently than Lewy body dementia in people over age 65. It is a generic term that refers to a whole host of conditions that affect blood circulation to the brain. For example, small blood clots called Transient Ischaemic Attacks (TIA) affect oxygen levels in the brain, while other blood vessel damage can occur through haemorrhage, which can affect the brain’s blood supply.
About Frontotemporal Dementia
This is a much less common form of dementia in people over 65; however, it does occur much more commonly in people in younger age groups. This type of dementia actually comprises a host of conditions involving brain cell damage and death in the frontal and temporal regions of the brain due to abnormally forming proteins. Two variants of the condition include Pick’s disease and primary progressive aphasia.
Warning Signs & Symptoms of Dementia
There are some early signs of dementia to look out for:
- Confusion, even when in a familiar environment
- Forgetfulness – recent events, names, everyday items
- Difficulty finding the right words
- Losing the thread of a conversation
- Difficulty performing daily activities and tasks
- Personality and mood changes
Risk Factors For Dementia
Although each form of dementia does have individual risk factors, all forms have these in common:
- Drug or alcohol abuse
- Cardiovascular issues like high cholesterol, high blood pressure, diabetes, heart disease, or stroke
- Mental health issues like depression
- High estrogen levels in women
- Head trauma
Each specific type of dementia has different signs and symptoms as the disease progresses:
About Alzheimer Symptoms and Risk Factors
Changes in the brain can occur up to a decade before someone ever starts showing signs of the disease. Symptoms are mild at first and worsen over time. The person will first likely develop language problems—problems partaking in conversations, repetition and difficulty finding the right word.
Because Alzheimer’s affects the portion of the brain called the hippocampus, dedicated to converting short-term information into long-term memory, memory lapses may soon follow. The sufferer might also exhibit issues with spatial awareness and misjudging distances. Over time, the person will become increasingly unable to problem solve, sequence tasks or make decisions. As the hippocampus changes progress, disorientation and an inability to recognise familiar people become apparent.
Age is by far the biggest risk factor for the condition, as people diagnosed tend to be over 65. Indeed, there is a one in six risk of the disease for people over age 80. Gender is also another big factor; twice as many women over 65 are diagnosed compared with men. Once thought to be genetic, cutting-edge research has shown that it is rare for Alzheimer’s to be passed to the next generation. If it is, Alzheimer’s is the early onset form that affects people younger than 65. Lifestyle choices are a big factor. People who abuse alcohol, smoke or have a lack of physical exercise or otherwise poor health are at greatest risk, as are people who have other complicating health conditions like heart disease or diabetes.
About Lewy Body Symptoms and Risk Factors
People with Lewy body dementia have all the same symptoms as Alzheimer patients, in addition to tremors, sleep disturbances, muscle stiffness and slowed movements. They can be unsteady and prone to falls, or suffer visual hallucinations and delusions.
Once again, age is the biggest factor, and the age risks are identical to Alzheimer’s. So are the gender risks, and like Alzheimer’s it is rare for Lewy body dementia to be genetic. Lifestyle factors contribute to this dementia just like in Alzheimer’s.
About Vascular Dementia Symptoms and Risk Factors
Since the TIA’s that cause vascular dementia are sporadic, so is the progression of dementia. After each TIA, the person may appear to be getting better, but unfortunately, the situation is only temporary, and over time, the brain damage interferes with attention, memory, motivation and daily living. Vascular dementia occurs in a step-wise fashion. People over 65 are diagnosed more often, but this form of dementia affects men more than women. Genetics is a factor, while a history of cardiovascular disease increases risk. Poor lifestyle choices also factor highly.
About Frontotemporal Dementia Symptoms and Risk Factors
People with this form of dementia often exhibit personality or behaviour changes, forming obsessive or repetitive characteristics. These patients often have a change in appetite and, like other forms of dementia, demonstrate memory and concentration problems.
Unlike the other forms, people under age 65 are most often diagnosed with frontotemporal dementia. It affects men and women equally, with about one-third of cases having a genetic component.
Although there is no certain way to prevent dementia, there are still many measures that can be taken to the reduce the risk of diagnosis:
- Regular checkups with your doctor
- Management of other illnesses like diabetes or heart problems
- Proper blood pressure and cholesterol management
- Follow medication instructions
- Weight management and healthy diet
- Weight loss if needed
- Smoking cessation
- Physical fitness and exercise
- Social activity and hobbies
- Learning and mental stimulation (crossword puzzles, learning a language, continuing education)
Stages of Dementia
Dementia is a progressive illness that occurs in these stages:
- Stage 1: The person appears normal. Many patients may cover up memory lapses at this stage.
- Stage 2: The person begins forgetting certain things. Otherwise, the person functions normally.
- Stage 3: The person may begin experience difficulties in home/work life and become anxious. At this stage, family usually notices signs of deterioration.
- Stage 4: The person can’t count numbers, and cannot manage their own affairs. Travel becomes difficult.
- Stage 5: At this stage, the person needs help getting dressed and performing personal care.
- Stage 6: The person is very disoriented and may forget family members or even their own identity. The person needs help eating and toileting.
- Stage 7: At the final stage, the person has severe speech loss, disorientation, motor stiffness, and needs help with all aspects of daily living.
Treatments for Dementia
Management of dementia will involve close communication with a doctor, who can provide advice on medication to manage the progression of the disease, help control symptoms and stabilise mood and behaviour.
There are also therapies that can be effective. Professional counselling is often recommended to help patients cope with both the diagnosis and the progression of the condition. Art or music therapy can be calming and provide mental stimulation. Behavioural therapies are sometimes used in conjunction with mood medications to address anxiety and depression, aggression and wandering.
Behavioural therapy targets the behaviours that trigger these negative responses. For example, caregivers can provide an exercise routine which reduces restlessness and wandering. Cognitive Stimulation Therapy is an approach that involves memory training, language exercises and problem-solving to improve cognition, memory and reasoning skills. There is also reality orientation treatment to reduce disorientation and confusion, and validation therapy involving discussion and acceptance of a dementia diagnosis.
Several tools exist to make the management of the disease a little easier including external memory aids, notes, and pictures to help the person remember to take medications or identify people. Implementing consistent daily routines can be very effective and provide comfort to the patient.
Stress management techniques are extremely important and can include meditation, social activities, music, pet therapy or exercise. Making environmental changes can also reduce stress. Removing loud noises or glaring lights creates a calm environment.
A strong family and friend support network is also key, as dementia can also take a significant toll on loved ones. Major lifestyle changes are usually involved, with advanced dementia patients typically requiring professional home care workers or admittance to a specialist residential care facility.
Although there is currently no cure for dementia, these methods can help manage the condition and provide coping skills to the patient and family.
Martina Kane of the Alzheimer’s Society said, “It is essential that people have access to the right support and services to help them live well with dementia and that research into better care, treatments and eventually a cure remain high on the agenda.”
Educating the public about dementia and its symptoms is vital, to improve awareness the condition from the patient’s perspective. Dementia is frightening, confusing, and can be embarrassing for the sufferer.
As dementia progresses, sufferers lose recent memories and may re-live events that happened in the distant past. Because of this, dementia sufferers often have trouble understanding their surroundings and concepts that seem normal to other people. Modern language and technology might be difficult to grasp.
Caring for dementia patients is a difficult job, especially for family and friends, who have to adjust to a very different relationship to their loved one. A dementia sufferer may no longer recognise those closest to them, despite their affection for those individuals.
There are some key strategies to remember when dealing with a person with dementia. Firstly, be careful when attempting to bring them to the present. If they are living in the past, forcing them into the here and now can be distressing. Avoid asking “do you remember” questions. Use distraction to redirect the person.
Dementia sufferers should consider carrying a card or wearing an ID bracelet to notify people that they suffer from the condition. This is particularly crucial for healthcare staff in an emergency situation.
Dementia sufferers often can’t track how much they’ve eaten, so monitor food and fluid intake to manage weight and conditions like diabetes.
UK language therapists are available to help with speech issues; your GP should be able to recommend the appropriate care pathway.
Families should remember these important coping skills:
- Your relative is not intentionally being difficult or behaving badly. These actions are due to the disease.
- Be careful when correcting the person, as this can lead to frustration.
- Remember to take care of yourself. You’ll be a better caregiver.
- Seek help from a specialist for counselling, advice and support.
For the person with dementia, these are some important steps to take:
- Don’t keep your feelings in. Talk to people about your feelings and fears. Tell family and friends how you would like things handled moving forward.
- Do things you really want to do. Travel, meet with friends and do other things that have been on your list.
- Think about appointing a family member or friend as your Health and Welfare Power of Attorney for future medical decisions.
- Get financial advice to put your affairs in order. Consider a Lasting Power of Attorney.
- Obtain government financial support through Personal Independence Payment if you’re aged 16-64, or through an Attendance Allowance if you’re aged 65 or over.
- Think about future housing options if your current situation is not appropriate longer term.
There are many care services for patients with dementia.
Home care is manageable in the early stages of dementia and can provide greater comfort in familiar surroundings. However, it’s important to modify the home for safety:
- Remove objects that could cause injury
- Block access to dangerous areas like stairs and garages that may contain chemicals and hazardous equipment
- Test smoke detectors, carbon monoxide alarms and fire extinguishers to ensure they work
- Keep bathrooms, hallways and stairwells well lit
- Keep medication in a locked drawer or cabinet
- Set the hot water temperature to prevent burns
If care is provided in-home, it is very important that the caregiver take personal time to cope with the enormous challenges that come with dementia care. Schedule regular care worker relief to come to provide breaks for the primary caregiver or investigate respite care options in your community. For example, adult day centres provide a safe excursion and offer structured activities and therapy programs in art and music. It also gives your loved one a chance to socialise. Some centres even provide transportation and meals.
Home health services from an agency are a great option. Professional care workers can come into the home to help with bathing and grooming, and skilled nursing care can also be provided. Agencies can also provide companion services or perform light household chores. When care services are utilised, it can give the primary carer a chance to run errands or socialise with friends.
Different care may be needed when dementia progresses into the later stages. Residential care outside the home may become necessary when everyday tasks become more challenging.
Assisted living options are available to help individuals who need help with meals and dressing but otherwise are functional and do not need skilled nursing care. Residents typically live in their own apartments and enjoy greater independence, although there is 24-hour staff available when needed. These communities typically have lots of activities so the person can lead an engaged social life.
Nursing homes offer a higher level of care by providing skilled nursing and 24-hour medical care. There are often specialised memory care facilities that are residential options exclusively for dementia patients. The entire facility might be dedicated to dementia patients or there might be a special wing of the facility that has safety measures like secured exits. The staff are also specially trained in memory care.
Care homes are personal homes certified to care for people with dementia. These facilities provide 24-hour care and residents typically have their own bedroom and bathroom for privacy. They share common spaces for meals and activities with other residents.
The choice of care depends on the stage of dementia, specific care needs and personal preference. Finances are also a consideration, as is the location and proximity to loved ones.