Alzheimer’s disease is an irreversible, progressive brain disease that slowly destroys memory and thinking skills. In most people with Alzheimer’s, symptoms come on gradually, first appearing after age 60.
The first sign of Alzheimer's disease is usually mild forgetfulness. At first, someone may have trouble remembering small things, like what they did yesterday. They may get confused easily. Some people get very good at hiding signs for a long time.
Eventually, they may forget how to do important, everyday things, like cooking meals, getting dressed or using the toilet. They may not recognise even close family members. This can make it very hard for someone with Alzheimer's to look after themselves. How bad and how quickly this occurs is different in each individual. The time from onset to death is usually very long – from five to 20 years.
Alzheimer's is a form of dementia
People with Alzheimer’s exhibit symptoms of dementia. The symptoms described above are exactly the same for dementia. That can be confusing, so just remember that Alzheimer’s disease causes dementia symptoms but dementia does not cause Alzheimer’s disease. It is virtually impossible to tell what has caused a person's dementia until after the person has died. At that point an autopsy can tell for certain what caused the dementia, although for most families/whānau it is irrelevant by then.
Families and whānau can find Alzheimer’s very difficult to come to terms with. If you or someone you know has been diagnosed with Alzheimer’s disease, it’s important to remember that you are not alone.
Getting help, support and advice at an early stage makes a big difference and there are many people and places available to you.
What causes Alzheimer’s disease?
Alzheimer’s is caused by brain cell death. New cells do not grow to replace the dead ones. Over the course of time the loss of brain cells causes the brain to shrink and the fluid spaces that surround the brain get larger to fill up the space. Scientists do not yet know what causes brain cells to begin dying or why it affects mainly older people.
Early-onset Alzheimer’s is a rare form of the disease that occurs in people aged 30 to 60 and represents a very small percentage of all people who have Alzheimer’s disease. Most cases of early-onset Alzheimer’s are based on genetics – a family history of the disease.
Signs to look for (symptoms)
Alzheimer’s is progressive, so symptoms will gradually get worse, but how quickly and in what ways depends on the individual. Alzheimers NZ and Alzheimer’s Australia refer to the Ten Warning Signs of Dementia (and therefore Alzheimer’s). These are listed here for you:
1. Recent memory loss that affects daily life
- It is normal to forget meetings, names or telephone numbers occasionally and then remember them later.
- A person with dementia may forget things more often, and not remember them later
2. Difficulty performing regular tasks
- Busy people can become so distracted from time to time that they may leave the potatoes on the stove too long and burn them.
- A person with dementia might prepare a meal and forget they made it altogether.
3. Problems with language
- Many people have trouble finding the right words sometimes.
- A person with dementia may forget simple words or substitute inappropriate words.
4. Disorientation of time and place
- It’s normal to forget what day it is or where you are going temporarily.
- A person with dementia may become lost in their own street, not know where they are, how they got there, or how to get back home.
5. Decreased or poor judgment
- Dementia affects a person’s memory and concentration, which can affect their judgment. Many activities, such as driving, require good judgment.
- It’s normal to forget where you are going from time to time and take a wrong turn.
- A person with dementia may forget which side of the road they’re supposed to drive on and pose a threat to other road users.
6. Problems with abstract thinking
- Balancing a cheque book might be difficult for many of us.
- A person with dementia might completely forget what the numbers are and what needs to be done with them.
7. Misplacing things
- Anyone can temporarily misplace a wallet or keys.
- A person with dementia might repeatedly put things in inappropriate places.
8. Changes in mood or behaviour
- Everyone becomes sad or moody from time to time.
- A person with dementia can have rapid mood swings, from calm to tears to anger, for no apparent reason.
9. Changes in personality
- People's personalities can change a little with age.
- A person with dementia can become suspicious or fearful, or just apathetic and uncommunicative. They may also experience a loss of inhibition, or become over-familiar or more outgoing than previously.
10. Loss of initiative
- It is normal for people to tire of housework, business activities or social obligations.
- A person with dementia can become very passive or require cues to complete daily tasks.
How the doctor determines if you have Alzheimer’s disease (diagnosis)
There is no straightforward medical test for Alzheimer’s. If this is suspected, your doctor will do tests to rule other possibilities, such as vitamin deficiencies, thyroid gland problems, depression, side effects of medication, infections and brain tumours. Once these are excluded as the causes of your symptoms then the doctor is better placed to consider Alzheimer’s.
Some things the doctor will do to help diagnose the condition:
- They will spend time talking to you (or the person you are concerned about). They will look at the person's medical history and that of other family members. The way in which the person's problems have developed is important and usually the doctor will ask many questions about the changes that have occurred in the person in order to help determine that your loved one has dementia and not one of the treatable conditions mentioned above.
- They will normally carry out a physical examination and may perform a number of tests, such as blood and urine tests, to identify other conditions that may be causing confusion.
- They may ask a series of questions designed to test thinking and memory.
At the end of their assessment, your doctor will let you know their findings and discuss what action needs to be taken. They may decide to refer you to a clinical psychologist for cognitive testing, or a different specialist such as a neurologist, psychiatrist or geriatrician for further tests. After this visit you will return to your doctor who will talk to you about the range of services available. It is useful to know what is available even if you might not need it right now.
There is no known cure for Alzheimer’s at the present time, although there are some treatments that may slow the progress of the disease. Researchers continue to look for new treatments to improve the quality of life for people with Alzheimer’s and to help reverse the affects. In the meantime, drug and non-drug treatments may help with both cognitive and behavioural symptoms.
The goals of treatment are to:
- slow the rate of decline
- treat other factors that might make confusion worse
- ensure the person is living the best life possible.
Your doctor will recommend a mix of treatment options which best suits you and your carers.
Psychosocial treatments (therapy)
These are non-medical treatments (often called talking therapies or psychotherapy) involving a trained professional who teaches techniques such as behavioural management techniques for caregivers, and validation therapy for the person with Alzheimer’s.
Medication, including antipsychotics, antidepressants and tranquillisers, is sometimes used in treating the complications of dementia. Although drugs cannot stop dementia or reverse existing brain damage, they can improve symptoms and slow its progression. There are also medicines that can help a little with forgetfulness and confusion. But they don't work for everyone. Caregivers should be told what effects the medication may have and receive clear instructions about how they should be taken and what precautions are necessary.
The term complementary therapy is generally used to indicate therapies and treatments that differ from conventional western medicine and that may be used to complement and support it.
Certain complementary therapies may enhance your life and help you to maintain wellbeing. In general, mindfulness, hypnotherapy, yoga, exercise, relaxation, massage, mirimiri and aromatherapy have all been shown to have some effect in alleviating mental distress.
When considering taking any supplement, herbal or medicinal preparation you should consult your doctor to make sure it is safe and will not harm your health, for example, by interacting with any other medications you are taking.
Full time care
At some point it's likely that that you will need full-time care, in a specialised residential care facility. It may help to prepare for this in good time, even if you think you are able to cope for a while yet.
Looking after someone with Alzheimer's disease
It can be a great strain to care for someone with Alzheimer's, so here are some points that may help:
- Learn all you can about the illness and its progression.
- People with Alzheimer's can lose the ability to keep track of money. So it's important to decide early who should help with decisions about money and health care.
- People with mild Alzheimer's may wish to plan for the future and discuss their treatment with relatives.
- Some people write an advance directive describing the medical and health care they'd prefer. An advance directive is consent or refusal to specific treatment(s) offered in the future when the person doesn’t have capacity.
- Explore options for long-term care facilities(ie, assisted living facility, continuing care retirement community, group home, nursing home), well before you need to consider using them.
- Find out how to access resources, respite care and emotional support. Alzheimers New Zealand and your doctor are great places to start.
- Maintain a living environment that will maximize the patient's ability to function is important and we include some tips below.
- Help to manage behavioral problems (below).
- Look after yourself and recognise when you are stressed (eg, anxiety, denial, depression, exhaustion, increased anger, increased health problems, irritability, poor concentration, sleeplessness, social withdrawal)
- Join your local Alzheimers New Zealand branch. It will have resources and support networks for you and your family/whānau. See the website links below in the resource section.
Strategies for reducing difficult behaviour on a person with dementia
Because everyone is different, it‘s hard to know how quickly someone's symptoms will change. Some people stay the same for a long time. Others have some good days and some bad days. Here are some suggestions to help you manage:
- Be prepared to orientate the confused person often – have a white board with the day, date and season written on it.
- Simplify tasks and requests. Ask only one thing at a time. Keep sentences short and repeat as necessary.
- Don't confront or corner the person as this will make them anxious. Distract them from whatever is upsetting them.
- Asking questions of people can make them anxious and upset if they don’t know the answer – limit questions.
- Always talk to the person by standing straight in front of them so that they can see you clearly (make sure, however, that you don't stand too close and overcrowd them).
- Always explain what you are doing and give simple accurate information.
- Never talk about them or whisper if they are in the same room.
- Be patient and watch your voice tone and body language. Even people with severe dementia can correctly read aggressive or angry body language.
- Be outwardly calm even if you don't feel it.
- Develop a routine each day. This will make the person less anxious. On the other hand, this has to be flexible as people with dementia want their needs met immediately and can't remember to wait.
- Make them feel useful by getting them to do what they can, eg, peel potatoes, wash up or set tables, but do not expect them to be able to achieve everything you ask them to do.
- Gentle exercise or supervised walks are useful to help sleep patterns.
- People with dementia often respond to old time music or pets.
- Maintain good physical health.
- The person with dementia should avoid alcohol, too much coffee, tea or excess sugar in the diet.
- Make sure the person drinks sufficient fluid and doesn't get constipated.
- Question the need for sedative medication, especially if it is being increased or additions made. Too much medication or drugs that interfere with each other’s actions cause many complications.
- Remove disturbing objects, such as mirrors if the person doesn’t recognise himself or herself in it.
- Alert neighbours if the person wanders.
- Give them a Medic-Alert bracelet with name, address and telephone number.
- Never leave a memory-impaired person alone in a parked car in case they wander.
- Never leave a confused person alone in a bathtub or shower in case they burn themselves or get frightened.
- It may help to leave a night light on, either in the room or the hallway, in case the person wakes and gets out of bed at night.
Thanks to Janet Peters, registered psychologist, and Lisa Ducat, Like Minds, Like Mine mental health promoter, for reviewing this content. Date last reviewed: September, 2014.