HOW TO HELP LOVED ONES DEALING WITH DEMENTIA

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As we age, any loss of memory in ourselves or a loved one triggers instant concern. Is it just forgetfulness? Or could it be a sign of something more serious, such as Alzheimer’s?

Alzheimer’s is a form of dementia, but not all dementia is Alzheimer’s. Not every older person will develop dementia either. And even if they do, there are a number of different kinds of dementia. Getting a correct diagnosis can help get your loved one the proper care that they need. So what exactly is dementia? Let’s look at this question in our first section.

What Is Dementia?

Dementia is an umbrella term used to describe the problems that older people begin to suffer in relation to their memory and ability to think clearly and function independently. Alzheimer’s is the best known form of dementia, but the good news is that not all cases of dementia turn out to be Alzheimer’s.

Typical symptoms of dementia are detailed below, and see this website for more information:

1. Memory loss that disrupts daily life

We all forget things from time to time, but one of the most common signs of dementia is memory loss related to important events in a person’s life, or them asking for the same information over and over again.

2. Challenges in planning or solving problems

This might include taking longer to do things they used to find easy or not being able to cope with the household budget, shopping, and bills that need to be paid.

3. Difficulty completing familiar tasks at home, at work or at leisure

The person will become less able to do things they normally did at work. They might have trouble finding familiar places or doing their usual chores.

4. Confusion with time or place

A person with dementia can lose track of the hours in the day, the days of the week, or how much time has passed. They might forget there they are or how they got there.

5. Trouble understanding visual images and spatial relationships

A person with dementia might have vivid visual hallucinations. They might also be more accident prone because they have trouble judging distance or making sense of traffic signs and signals.

6. New problems with words in speaking or writing

We all forget the right word we are looking for from time to time, but a person with dementia may lose track of their sentences in the middle of a conversation. They might also repeat the same words and phrases over and over again. Their written work may be disjointed and have gaps.

7. Misplacing things and losing the ability to retrace steps

A person with dementia may put things in unusual places and not remember what they were doing before they lost the item. They might accuse others of stealing or insist someone has been in their home when they have been on their own, or no one else has been there except their family.

8. Decreased or poor judgment

Examples of poor judgment include giving away money, not eating sensibly, and showing less self-care, such as neglecting to wash or dress in clean clothes.

9. Withdrawal from work or social activities

As some of these signs of dementia start to become more obvious and worrying, the person with dementia might begin to isolate themselves due to their condition, and also to embarrassment and shame.

10. Changes in mood and personality

As the memory changes, so too can the personality. Depending on the kind of dementia and how aware they are of it, a person with dementia can become depressed, anxious, confused, frightened and withdrawn. They might also go to the other end of the spectrum and become angry, suspicious, resentful and difficult to deal with.

These ten symptoms can become progressively worse over time. On the other hand, depending on the cause, some people’s condition can stabilize.

There are different degrees of impairment of memory and mental abilities, and not all of them are due to underlying damage to the brain as a result of aging. Before we go on to look at dementia in more detail, let’s look at some causes of issues with memory or behavior that might not be dementia after all.

Common Reasons for Dementia-like Symptoms

1. Injury

Injury such as concussion or traumatic brain injury can cause significant changes in memory and even personality.

2. Over-the-counter and prescription medications

In some cases, medications could be the culprit. Over-the-counter medications to watch out for include antihistamines for allergies, antacids, and sleeping pills. Classes of prescription drugs to watch out for include antidepressants, statin drugs to treat cholesterol, antihypertensive drugs to lower blood pressure, and insulin for those with diabetes. There are alternatives to many of these medications that might help reverse any signs of what you might think is dementia.

3. Lifestyle issues

Known causes of memory loss include:

  • Alcohol use
  • Tobacco use
  • Drug use
  • Not enough sleep
  • Poor quality sleep, such as waking often in the night due to breathing problems (COPD) or the urge to urinate
  • Fatigue
  • Depression
  • Stress
  • Poor nutrition
  • Eating too many sweets

Anything that can be done to address these issues could lead to recovery.

4. Other medical issues

Certain medical conditions are known to trigger dementia-like symptoms. These include:

  • An underactive thyroid
  • An overactive thyroid
  • HIV/AIDS
  • Tuberculosis
  • Syphilis
  • Stroke (usually caused by high blood pressure)
  • Diabetes

Now that you know what dementia is and some of the main contributing factors to memory loss and possible dementia, let’s look at some of the main types of dementia.

The Main Types of Dementia and Their Causes

Part of the difficulty in getting a dementia diagnosis is that there are several types of dementia, including:

1. Mild cognitive impairment (MCI)

2. Dementia with Lewy bodies (DLB)

3. Parkinson’s disease dementia

4. Vascular dementia

5. Normal pressure hydrocephalus

6. Wernicke-Korsakoff syndrome

7. Huntington’s disease

8. Creutzfeldt-Jakob disease

9. Mixed dementia

10. Alzheimer’s disease 

Let’s look at each of these briefly.

1. Mild cognitive impairment (MCI)

This the mildest form of dementia. Symptoms range from memory loss to a risk of progression to Alzheimer’s. The changes are not so severe that they interfere with daily life or independent living. In some cases, the person can even recover.

2. Dementia with Lewy bodies (DLB)

People with DLB often have memory loss and thinking problems, but are more likely than people with Alzheimer’s to have early warning signs such as disturbed sleep, visual hallucinations and trouble with their muscles that are similar to those found in a person with Parkinson’s disease.

Lewy bodies are clumps of the protein alpha-synuclein. If they gather in the cortex of the brain, they can trigger dementia. These clumps are also found in those with Parkinson’s, but in different areas of the brain. DLB is challenging because the symptoms can come and go, leading people to think the sufferer is just being moody or difficult.

3. Parkinson’s disease dementia

Parkinson’s is a progressive degeneration of the nervous system. Symptoms include muscle tremors, spasms, and rigidity, making it difficult for the person to perform their activities of daily living without help. The boxer Muhammad Ali and the actor Michael J. Fox are two examples of high-profile individuals with the condition. The proteins that cause DLB gather in the basal ganglia and results in a progressive dementia similar to that of dementia with Lewy bodies.

4. Vascular dementia

Vascular dementia accounts for around 10% of dementia cases. It is caused by changes in the blood vessels in the brain due to cardiovascular health issues, in particular stroke. The most notable sign is not memory loss but having trouble making decisions and perhaps changes in mental and physical function, including paralysis (based on where the damage to the blood vessels in the brain has occurred).

Knowing the signs and symptoms of stroke using the F.A.S.T. system can help prevent serious damage. So can keeping blood pressure low, to prevent strokes from occurring.

5. Normal pressure hydrocephalus

This is caused by a build-up of fluid in the brain. Drainage will usually bring relief. It will trigger loss of memory, trouble walking, and difficulty controlling urination (incontinence).

6. Wernicke-Korsakoff syndrome

Wernicke-Korsakoff Syndrome is a chronic memory disorder caused by severe deficiency of thiamine (Vitamin B1). The most common cause is alcohol misuse. Memory issues may be severe, but thinking and interacting with others might seem perfectly normal. 

7. Huntington’s disease

Huntington’s disease is a progressive brain disorder caused by a single defective gene on chromosome 4. Over time it can lead to abnormal involuntary movements (spasms), a severe decline in cognitive skills and a noticeable change in mood such as depression and irritability.

8. Creutzfeldt-Jakob Disease (CJD), commonly referred to as mad cow disease

CJD is a rare condition, a fatal brain disorder that impairs memory and coordination and causes behavior changes as a result of prion proteins that make the brain malfunction. It comes from eating beef from an infected cow.

9. Mixed dementia

This is defined as a person suffering from more than one form of dementia, such as vascular dementia with Alzheimer’s.

10. Alzheimer’s disease 

Alzheimer’s makes up 60% to 80% of dementia cases. The early symptoms may include:

  • Listlessness
  • Depression
  • Memory loss
  • Difficulty communicating
  • Mental confusion
  • Behavior changes (sometimes extreme)
  • Trouble doing normal activities of daily living such as dressing, washing, eating
  • Trouble with basic skills such as speaking, swallowing and walking

Alzheimer’s is diagnosed through marked changes in the brain:

1 – Deposits of the protein fragment beta-amyloid (plaques)

2 – Twisted strands of the protein tau (tangles)

3 – Nerve cell damage

4 – Nerve cell death

Alzheimer’s is now considered to be a progressive, fatal illness with a life expectancy of five to seven years after diagnosis. A recent study has named it the third leading cause of death in the US after heart disease and cancer.

Knowing this can be very distressing for caregivers trying to do their best for loved ones with Alzheimer’s, but this knowledge can also empower them to give their loved one better palliative (end of life) care by knowing what to expect. It is a case of quality of life rather than duration.

We’ve talked about the different types of dementia and their causes. Next, let’s look at the stages of dementia.

What Are the Stages of Dementia and Alzheimer’s?

Alzheimer’s has seven stages. Dementia, sometimes described as dementia without Lewy bodies, has three to five stages depending on how you wish to define a stage. A scale of cognitive function is used for diagnosis. Knowing what to expect at each stage can help you be a better caregiver for your loved one.

The seven stages of Alzheimer’s disease are:

1. No impairment

2. Very mild decline

3. Mild decline

4. Moderate decline

5. Moderately severe decline

6. Severe decline

7. Very severe decline

It is important to note that some of these stages may overlap. Late stage care will involve the loved one needing more and more assistance, which the caregiver can provide and/or get help with.

In terms of dementia staging, many professionals use the Clinical Dementia Rating (CDR) scale to evaluate if dementia is present, and how severe it might be.  The score is based on a patient’s ability to perform in six different cognitive areas:

1. Memory

2. Judgment

3. Home and hobbies

4. Personal care

5. Orientation/awareness

6. Community

The five stages are:

1. CDR 0 – no impairment

2. CDR 0.5 – questionable impairment

3. CDR 1 – mild impairment

4. CDR 2 – moderate impairment

5. CDR 3 – severe impairment

To simplify your caregiving, focusing on these last three stages of this five-stage scale will help you determine what actions to take in order to help your loved one most effectively.

Note that not all dementias are progressive. As we have discussed, there are a range of ways for the dementia sufferer to help themselves, and for you as a supportive caregiver to encourage them. Let’s look at some of these strategies in the next section.

Effective Caregiving for a Person with Dementia

Caregiving can be the toughest job you will ever have. It will usually have to be juggled as part of an already busy life with work, caring for a family, and then adding elder care issues on top. Fortunately, there are many things you can do to prevent dementia worsening or ease symptoms for a better quality of life, for as long as possible.

If you think your loved one might have dementia, the first thing to do is start a diary of your observations about their condition, medications they take or are prescribed, and so on. 

Next, try dealing with the most obvious lifestyle issues first to see if it makes a difference. Stopping certain medications, or helping them quit smoking or drinking alcohol can all help. So can ensuring they eat a healthy, balanced diet.

An Anti-Dementia Diet

Researchers have recently published a promising study in relation to an effective diet shown to improve cognition even in people of advanced age. They named it the MIND Diet, and it is a combination of the Mediterranean diet and the DASH diet for those with high blood pressure. A good diet for brain health will include B vitamins, omega-3 fatty acids and antioxidants.

The cornerstones of the MIND diet are:

  • Green leafy vegetables
  • A wide range of vegetables rather than meat
  • Nuts like walnuts
  • Berries such as blueberries
  • Beans and legumes such as kidney beans
  • Whole grain bread and cereal, such as oatmeal
  • Fatty fish like salmon, which are rich in omega-3 fatty acids to help brain health
  • Lean poultry (white meat chicken and turkey)
  • Olive oil
  • A small amount of red wine, which has certain antioxidants in it

Foods to avoid include:

  • Fast food/fried foods
  • Pastries, cakes, and candy
  • Butter and margarine (high in fat) and foods with trans fats
  • Cheese and full fat yogurt (also high in fat)
  • Red meat, especially if it is charred, since this can also trigger certain cancers

If none of these lifestyle strategies offer any improvement, then it is time to start giving more supportive care appropriate to the particular stage of dementia they are suffering from.

Stage 1: Caregiving for Early Dementia

Suggested activities include:

  • Memory aids like a diary and checklists
  • A pill carrier for all of their most important medicines, divided by days of the week and time of the day
  • Electronic calendar or mobile phone reminders for taking medications and all other important appointments
  • Discussing caregiving options
  • Discussing end of life wishes
  • Getting all the paperwork in place such as a living will, medical proxy, etc.
  • Online bill pay and keeping money in the bank account to cover essential expenses

Stage 2 Care

Suggested activities include:

  • Giving some help with activities of daily living, such as washing and toileting if needed
  • Dealing with anxiety or depression
  • Dealing with mental confusion
  • Checking in with their doctor regularly about the care
  • Making sure you have a good support network in place
  • Researching care options such as assisted living, nursing homes and hospices
  • Caring for your own health so you do not burn out
  • Mastering make-ahead and freeze meals so you can cook once and fill the freezer with healthy meals anyone can just heat and eat
  • Making sure all legal paperwork is in place

Stage 3 Care

Suggested activities include:

  • Giving a lot of help with activities of daily living, such as washing and toileting if needed
  • Dealing with behavioral changes
  • Making sure your loved one is supervised throughout the day and night
  • Checking in with their doctor regularly about the care, medications and so on
  • Making sure you have a good care team in place for all their needs
  • Taking steps to move them out of their home if they can no longer be independent into assisted living, a nursing home, or hospice
  • Dealing with any other medical issues they may have
  • Caring for your own health so you do not burn out; getting counselling, joining a support group, and so on
  • Making sure all legal paperwork is in place
  • Knowing what to expect when a person dies – paperwork, funeral arrangements, costs and so on

No one likes to think about these issues, but it is better to know in advance than have to deal with them when you are very stressed or grief-stricken.

Now that we have covered a range of care options for early, middle and late stage dementia, let’s look in a bit more detail at the medications available for treating dementia and its symptoms.

Medications for Dementia

There a number of medication options for a person with dementia which can be helpful. They fall into four types:

1. Correcting

Doctors will try to correct any issue that might be causing the dementia, such as prescribing thyroid hormone or adding B vitamins to the diet, or changing medications that have memory loss as a known side effect.

2. Maintaining

The drugs donepezil, galantamine, and rivastigmine will try to maintain mental ability for as long as possible. Many of these drugs have been developed for those with Alzheimer’s but might also help patients with other types of dementia. Side effects include nausea, vomiting, diarrhea, and weight loss.

Memantine is also used with Alzheimer’s patients but might also be effective for those with vascular dementia.

3. Preventing

Since some dementia is vascular – that is, caused by strokes, the doctor may prescribe drugs to lower blood pressure and cholesterol.

4. Managing moods

If you have tried other strategies for managing moods, like checking their overall health to see if there are other medical issues such as pain, but not had any success, the doctor may prescribe:

  • Antipsychotic drugs such as olanzapine (Zyprexa) and risperidone (Risperdal).
  • Antidepressants, especially selective serotonin reuptake inhibitors (SSRIs), such as Prozac and Zoloft.

Remember that all medications carry a risk of side effects, whether prescription or over the counter. Note any sudden change; it could be the drugs, not the dementia.

With so many headlines about Alzheimer’s surrounding us, very little of it good news, it can be easy to panic if we or our loved ones start to show signs of memory problems. In many cases, the memory loss can be triggered by lifestyle issues, such as sleep deprivation or stress. Changes in memory can also be caused by a wide range of over-the-counter and prescription medications.

Getting a correct diagnosis can help you identify the type of dementia your loved one has so you can give them the proper care that they need to maintain not just life, but quality of life, for as long as possible.

Being a caregiver to a person with dementia can be a challenge. We hope this guide will help support you in this challenging but rewarding role.

Resources & More Information

Alzheimer’s Association

Mayo Clinic: Dementia

End of Life Paperwork

End of Life: Helping with Comfort and Care

Medical News Today

Bloomberg

Causes of memory loss

Medications that can cause memory loss

Prescription drugs that can cause memory loss