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A guide to understanding dementia care


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Dementia care

What is dementia?

Dementia is an all-encompassing term for categorising a group of symptoms noted for a decline in a person’s mental ability to operate in an everyday environment. People diagnosed with dementia can experience extremely high levels of stress and a high sensitivity to the world around them. Examples of dementia include Alzheimer’s disease and memory loss.

Dementia care can be difficult, so let this informative overview of the most common types of dementia, its signs and symptoms, the stages of dementia and suitable medications give you a thorough understanding of the condition.

Types of dementia

Alzheimer’s disease: This is the most common and well-known cause of dementia, affecting as many as 60% of people with dementia. It is brought about by a build-up of protein on the brain which forms plaques and tangles that affect the brain’s ability to function.

With Alzheimer’s disease, behavioural changes are generally slow to develop, but will become substantially greater with the passing of time. Warning signs of which you should take note include memory loss, forgetting where items were left, inability to keep track of time and sudden mood swings.

Vascular dementia: This is the next most common type of dementia and is brought about by the loss of blood flow to the brain. Vascular dementia has two main types, one caused by strokes and the other by small vessel disease. Its development usually occurs in sporadic steps rather than a gradual flow, although it can still be difficult to notice in its early stages. Problems with memory and concentration are prevalent in vascular dementia sufferers, many of whom also experience depression.

Lewy body dementia: This type of dementia shares many of the characteristics of Alzheimer’s, such as a steady, gradually increasing development of symptoms like memory loss and being stuck for words in conversational mid-flow. Other warning signs include trembling, a tendency to shuffle while walking, hallucinations and an inconsistent sleeping pattern.

Frontotemporal dementia: With this type of dementia, memory loss doesn’t tend to occur in the early stages, but notable changes in personality and behaviour can be detected. The person affected may lose their insight and unwittingly make inappropriate remarks, which can cause difficulty for family members. The progression of frontotemporal dementia is far less predictable than most other types, with symptoms at a later stage mirroring those of Alzheimer’s disease.

Symptoms and signs of dementia

The exact symptoms of dementia will vary from one type to the next, although there are numerous symptoms which commonly apply to the majority of dementia types. Dementia symptoms usually start out slowly but get progressively worse at a quicker speed if not treated. For dementia to be diagnosed correctly, at least two of these five functions must be significantly impaired:

Signs of Dementia

Dementia symptoms which indicate cognitive changes include:

1. Memory loss (usually noticed by a friend or family member)
2. Difficulty with communicating or finding the correct words
3. Difficulty with reasoning, counting or problem-solving
4. Difficulty with performing sophisticated tasks
5. Difficulty with planning or organising everyday tasks
6. Difficulty with co-ordination and motor functions
7. Confusion/disorientation in unfamiliar surroundings
8. Increased drowsiness
9. Slower muscle movements

Dementia symptoms which indicate psychological changes include:

1. Previously unseen personality traits (e.g. increased impatience)
2. Depression
3. Anxiety
4. Behaving inappropriately in social situations
5. Paranoia
6. Irritation

If left untreated, or if the progress of dementia cannot be halted, the symptoms can become very severe, so much so that the person will require near-permanent care. Symptoms of extreme dementia include:

1. Inability to identify family members and close friends
2. Inability to recognise surroundings
3. Difficulty with carrying out basic everyday tasks
4. Inability to understand simple conversations
5. Total loss of speech
6. Requirement to be accompanied while walking even short distances (e.g. to the bathroom)
7. Inability to get out of bed
8. Frequent clumsiness
9. Bladder/bowel incontinence
10. Difficulty with eating/swallowing almost all food and drink

Dementia care

Stages of dementia

Most types of dementia are progressive, meaning that the condition will worsen with the passage of time. The Clinical Dementia Rating (CDR) identifies five stages of dementia, the characteristics of which are outlined below, and these stages are categorised according to six areas of cognition and functioning:

Stages Of Dementia

Stage 1: No impairment (CDR-0)

1.  No memory loss, only slight and occasional forgetfulness
2.  Fully oriented
3.  Able to solve everyday problems and make reasoned judgements
4.  Able to function independently in workplace and social situations
5.  Able to function at home and engage in hobbies as normal
6.  Fully capable of caring for himself/herself

Stage 2: Questionable impairment (CDR-0.5)

1. Consistent if slight forgetfulness, mild difficulty with recall
2. Fully oriented except for slight difficulty with time relationships
3. Slight difficulty with solving everyday problems
4. Slight difficulty with functioning independently in workplace and social situations
5. Slightly impaired ability to function at home and engage in hobbies as normal
6.  Fully capable of caring for himself/herself

Stage 3: Mild impairment (CDR-1)

1.   Difficulty recalling recent events
2.   Moderate difficulty with time relationships, also possible geographic disorientation
3.   Moderate difficulty with solving everyday problems, but social judgement is still decent
4.   Needs some assistance with functioning in workplace and social situations
5.   Unable to complete more difficult home tasks and hobbies
6.   Needs reminding about personal hygiene

Stage 4: Moderate impairment (CDR-2)

1.  Little information retained and new information swiftly forgotten
2.  Severe difficulty with time relationships, also regular geographic disorientation
3.  Severe difficulty with solving everyday problems, social judgement usually impaired
4.  Evidently needs assistance with functioning outside the home but can still function outside the home with help
5.  Only able to complete basic home tasks and hobbies
6.  Needs help with personal hygiene and getting dressed

Stage 5: Severe impairment (CDR-3)

1.  Only able to recall fragments of memory
2.  No orientation outside of the person
3.  Unable to make judgements or solve everyday problems
4.  Completely unable to function outside the home, even with help
5.  Unable to complete any home tasks and hobbies
6.  Frequent incontinence, needs constant help with personal care

Medication for dementia

Medication for Dementia

Although there is no exact cure for dementia, the effects of the condition can be alleviated by a series of medications recommended by the Alzheimer’s Association, as outlined below.

Donepezil

Benefits: Only cholinesterase inhibitor that is effective for treating all stages of dementia; supports communication by keeping acetylcholine levels high; can delay worsening of symptoms by 6-12 months

Stages treated: All

Recommended brand: Aricept

Possible side effects: Nausea, vomiting, loss of appetite

Galantamine

Benefits: Supports communication by keeping acetylcholine levels high; can delay worsening of symptoms by 6-12 months

Stages treated: Mild to moderate

Recommended brand: Razadyne

Possible side effects: Nausea, vomiting, loss of appetite, increased frequency of bowel movements

Rivastigmine

Benefits: Supports communication by keeping acetylcholine levels high; can delay worsening of symptoms by 6-12 months

Stages treated: Mild to moderate

Recommended brand: Exelon

Possible side effects: Nausea, vomiting, loss of appetite, increased frequency of bowel movements

Memantine

Benefits: Improves memory, attention, reasoning and ability to handle daily tasks; temporarily delays worsening of symptoms

Stages treated: Moderate to severe

Recommended brand: Namenda

Possible side effects: Headaches, constipation, dizziness

If the dementia patient is to have medication prescribed for them, it is very important for their caregiver to:

1. Understand what medication is being prescribed and why
2. Understand the benefits and side effects of any medication being prescribed
3. Encourage the dementia patient to partake in medication decisions with his/her doctor, if the patient is capable of doing so
4. Ask the doctor any questions the caregiver may have about the medication
5. Ask the doctor to set out a schedule of dosages and times
6. Report to the doctor any feedback from the patient about the medication
7. Try and build a rapport with one doctor or pharmacist so that the healthcare professional can easily deal with any queries or dispense new batches when needed
8. Inform another suitable caregiver of the medication routine and any healthcare professionals with whom a rapport has been established

Advice for caring for someone with dementia

A caregiver offers his advice on dementia care based on the experience of caring for his wife, who suffers from dementia.

Communicating with someone with dementia

1. If the person finds verbal communication difficult, speak more slowly and use simple words and phrases.
2. Use gestures when communicating with the person, as they are likely to pick up on these.
3. It is very important to listen attentively to the person. Try to determine exactly what they are attempting to say.
4. Try to avoid sudden movements and tense facial expressions.
5. Don’t stand over the person or within their personal space, as this may cause them to feel intimidated.
6. Include the person in conversations and allow them to talk instead of speaking for them or unnecessarily finishing their sentences.
7. Try to avoid asking the person a lot of open-ended questions. Instead, give them a simple yes or no option, or state a small number of different options.

Encouraging independence from the person with dementia

1. Engage in activities with the person instead of simply doing the activity for them. If you show a willingness to do the activity with them (but not for them), they are more likely to actively engage in it.
2. Emphasise what the person can do, not what they can’t.
3.With any activity the person does try, be patient with them and offer plenty of praise and encouragement, as they will respond positively to this.
4. Break down tasks into small, manageable steps that are easy for the person to understand and attempt.
5. Take note of activities that the person enjoys and keep encouraging them to do these, although it is a good idea to add variance to such activities.
6. Emphasise the positivity of the process rather than simply focusing on completing a task. The attempt matters more than the end result.
7. Encourage the person to make as many decisions as they reasonably can, while taking into account the person’s decision-making capabilities based on their stage of dementia.

Supporting the person’s emotional responses

1. It is impossible to know the full extent to which the person is suffering, so you should take at face value anything they say about how they feel.
2. Never dismiss or make light of the person’s worries. Show them that you are listening and that you care.
3. Try to live for the moment instead of being overly fearful of what might happen. You can still mind the person safely without communicating the element of fear.
4. Try to smile, laugh and be happy around the person as much as reasonably possible, as they will feed off this positivity and respond accordingly. However, if the person is clearly feeling down, put the cheerfulness aside, as it may not be appreciated in this instance. Evaluate the situation as appropriate.

Maintaining the person’s self-confidence

1. Always accentuate positives, even for minor things. What may seem basic to most people can be a real accomplishment for a person with dementia. Just try not to make it sound patronising or condescending.
2. Never criticise the person or speak angrily to them.
3. Always be mindful that even the seemingly smallest praise or criticism can have a huge effect on the person’s self-esteem.
4. If the person makes a mistake, be supportive and encourage them to try the action again instead of abruptly correcting them.
5. Encourage the person to interact with others and build friendships. Like-minded interest groups are an excellent way to do this. However, this may not be advisable if the person’s dementia is so pronounced that social interactions become difficult or impossible.

Maintaining a positive relationship with the person

1. Focus on what your relationship with the person is now rather than comparing it to what it used to be.
2. Enhance the relationship by taking part in creative activities with the person, partaking in hobbies with them or simply by reminiscing.
3. Talk to friends, family or healthcare professionals about changes in the relationship. They could dispense some excellent advice or act as a supportive ear for you to possibly get some concerns off your chest.

Looking after yourself

1. Don’t be afraid to seek respite care if you feel that there could be a strain in the relationship and you think that a brief spell of time apart from one another would help.
2. If you feel guilty about taking time for yourself, which can often happen given the hugely unselfish nature of caregivers, seek support from friends, family, doctors, counsellors or support groups.
3. If you don’t want to take a prolonged break from the person for whom you’re caring, schedule a portion of time during your day to indulge yourself in whatever makes you unwind (e.g. reading a book, going for coffee with a friend, going shopping).
4. Give yourself time to eat properly, get some exercise and obtain an adequate amount of sleep. If you neglect your own health, the standard of care for the patient could subconsciously drop.
5. Don’t leave yourself out of pocket from caregiving. A controlled level of expenditure is OK but beware that the level of spending doesn’t get out of hand.
6. Know what you can and can’t do. Be honest with yourself so that you can be honest with the person for whom you’re caring.