When a person is diagnosed with a terminal, degenerative illness, the partner suffers relentless, devastating loss. In an instant, the partner becomes a care partner, a single parent, the primary source of income, while managing the family's finances and caring for children who may need more time and consideration than ever before. Nothing about this journey is simple or painless. The care partner must interact with friends and family who don't understand what the care partner is going through. The friends and family may unwittingly underestimate the care partner's pain by minimizing the situation ("Well, he seems fine to me! Isn't that encouraging?").
• Be employed at the time of diagnosis
• Have dependent children or parents
• Be more physically fit and active
• Have heavy financial commitments, such as a mortgage or children in university
• Have a rarer form of dementia
• When dementia begins in midlife, a person is more likely to be misdiagnosed. An accurate diagnosis of EOD can take a very long time, often due to lack of awareness of dementia in people under 65, even among physicians.
• Often the diagnosis of dementia occurs at a time of life when a person is still financially supporting the family. The loss of income can be devastating to the family.
• When a person becomes disabled and can no longer perform the duties that are required for the job, the person’s benefits may also be lost. Ensure the person with dementia has had a full assessment with a definite diagnosis prior to the person quitting work. The person and care partner may be able to access employee benefits where available based on the correct diagnosis. This may enable the family to obtain adequate support and health care services.
• These are a few types of disability benefits that a person may qualify for.
If a person has disability through work then the person may qualify for short term disability or EI Benefits, and long Term Disability.
EI can be applied for on the following website: www.cra-arc.gc.ca
• Consider the risks associated with the type of work and assess if the person can continue to work safely.
• Most services are designed to help a person with dementia that is older and is not planned for a younger person and their family.
• Gives a person with EOD time to plan for the future while still being able to participate in making decisions.
• Time to think of different strategies for accommodating limitations at work before approaching an employer. Approach the employer accordingly.
• Make sure the person with dementia is aware of potential repercussions of discussing the diagnosis with the employer. Approach the Employee Assistance Program if this is available to discuss different options. Be familiar with the company's benefits. Once the options have been considered, and if the person chooses to talk to the employer, explore what benefits are available through the work place, private insurance and through the Canadian Pension Plan and/or Provincial Disability Support Programs.
• Find out whether early retirement is an option.
• Often a person doesn't take advantage of the benefits the employer offers.
Some employers provide free contributions each year on the person’s behalf, to a pension to a set amount (typically 3% to 6% of their salary). To qualify, the person has to match the employers contributions, automatically deducted from their paycheque. Some plans are professionally managed and have a guaranteed retirement income. This is the best kind to have. Other plans expect employees to decide how to invest the money, usually by choosing from among a menu of mutual fund–like options. While this plan isn’t as desirable as the guaranteed retirement income it still is very worthwhile to contribute to.
People with EOD will eventually be unable to work and this loss of income is often a serious concern. Care partners may also quit their jobs or decrease work hours, which increases financial strain.
• Talk to a financial advisor and to a lawyer to help plan for the future financial needs.
• Put safeguards around excessive spending, gambling and be aware of vulnerabilities to scams.
• Younger people with dementia, and care partner's, need to make sure that they are receiving the benefits to which they are entitled.
• A power of Attorney (POA) is a document that gives a person the right to make financial, property and personal care decisions on behalf of another person.
• Complete a POA as soon as the diagnosis is made to assist with planning as the disease progresses.
• POAs vary from province to province. Consult your provincial Ministry of the Attorney General for information and assistance.
Receiving the diagnosis of Early Onset Dementia is very devastating news both for the person and the care partner. The person with dementia may never accept the diagnosis. The next challenge is explaining the diagnosis to the children, family and friends and the employer. Sometimes a person chooses not to tell the employer right away and try to continue to work for a bit longer because of financial reasons.
• A person diagnosed with Early Onset Dementia (EOD) often has young or dependent children at home. It is important that a child understands EOD, how it affects their family and what changes to expect in the parent diagnosed with EOD. Adapt the information to be age appropriate so that a child can understand what is happening. Do not give more information than the child is able to cope with.
• Parenting while fulfilling the demands of a care partner to a severely ill person with dementia requires support. Sometimes the emotional needs of a child may not be addressed properly, because the parent is overwhelmed performing the duties of a care partner. Safety, financial survival, or life and death decisions may become a priority before the child's needs, but the child requires even more attention and affection during this time.
• A child is often aware of the changes within the family even when they have not been told the facts, so it is reassuring for the child to be given the facts.
• Although the truth will be distressing, a child may feel relieved knowing that the changes in the person’s behaviour or personality is caused by an illness.
• Seeing how the care partner responds to the diagnosis helps a young person develop skills necessary to cope with difficult situations, and manage painful emotions.
• Reassuring a child that the care partner is still there for them is so important, and that the care partner understands the difficulties the child faces. A child needs to feel stability amidst difficult changes.
The care partner needs to take care of them-self so that they can remain balanced and patient. A child is highly sensitive to a person's mood. One of the toughest parts of the whole ordeal for a child is feeling the pain of one parent and losing the other parent. Stress negatively affects the care partner's health, and deeply influences the well-being of a child.
Attending sports, school events and sharing outings that nurture the relationship with a child is so important. Younger children may be more inclined to demand attention, but teens will drift away to "spare" additional worry. It is imperative to establish and maintain open communication and unspoken support. In many cases, a child is losing one parent; they need to feel confident they will not lose both.
Often after the diagnosis of dementia a person gives up work and other activities that they enjoy, including hobbies, shopping and sports. Sometimes the profound stigma which is associated with dementia leaves a person feeling a sense of shame and socially isolated. Family and friends stop visiting as they may feel uncomfortable with how to interact with the person with dementia. Helping friends and family members understand the changes in the person with dementia, allows the friends and family to respond with appropriate understanding and concern.
The lack of interaction with friends and family leads to feeling abandoned and depressed. The isolation may be harder to accept than the changes to the brain and the loss of memory.
Diving is one of the most difficult topics to approach when a person has dementia. No one wants to think about having their license removed. The possibility of a person having their licence suspended can be extremely upsetting as driving is associated with independence and freedom.
As difficult as it may be, driving is an issue that needs to be addressed; the earlier this is done the better.
When cognitive conditions affect abilities, even the best of drivers can become unsafe through no fault of their own. That is why the person’s past driving record may no longer be relevant when decisions need to be made about how safe a driver the person is now. No one wants to drive if they are a danger to themselves and others on the road.
Once a diagnosis of some form of dementia is made often the Physician will approach the topic of driving. The Physician will then recommend referring the person to Drive Able. Once drive able gets the referral they will contact the person to come for the comprehensive part of the testing.
Drive able provides a fair and objective assessment. The cognitive assessment tests abilities essential for safe driving. This includes tests of motor speed and control, span of attention, spatial judgement, memory and decision making and making judgement of hazardous decisions.
This is performed on a touch screen computer with the assistance of an evaluator. After an explanation and demonstration, the person with dementia practices each section prior to beginning the test. Depending on the results of the cognitive part of Drive Able the person with dementia may or may not be allowed to take a road test.
The road test is specifically designed to save healthy drivers from being misidentified as unsafe drivers. The result of the testing is sent to the Physician's office. Although there is a fee to take drive able it is well worth the testing to ensure the person with dementia is diving safely.
Regardless of the results of the testing, both the insurance company and Alberta Transportation must be notified of the diagnosis (change in status of health). If the person with dementia passed drive able, Alberta transportation will most likely send a medical form that needs to be filled out by the Physician. Depending on the response from the Physician, the person with dementia may be required to take a class 5 driving test through Alberta Transportation which will be at no cost to the person. If the class 5 driving test was not successfully passed, each subsequent testing will be at the cost of the person attempting the driving test. If a person has their driver's licence removed an Alberta Photo ID is required to replace the driver's licence. Everyone requires some form of photo ID.
An individual may have to continue taking driving tests as the disease progresses. Safety is most important.
Each person with dementia has shifting capabilities which the care partner will recognize the best. As a care partner it is extremely important to document the progression of the person's disease. It may seem like a subtle change at the time but it could be the beginning of a significant change. The care partner will be the best to determine when changes are happening and adjustments have to be made.
Most forms of dementia do not have a sudden onset. In the beginning and middle stages of the diseases a person can still have a useful, functional, and somewhat independent life if there is adequate assistance and support services. However even in the early stages there are intermittent problems associated with memory loss and a dimming of cognitive abilities. It is easy for a person with dementia to get lost and not to be able to find their way home and as a result they experience feelings of frustration, isolation, anger and a sense of helplessness. Eventually a person with dementia can find them-self even more isolated eventually leading to depression.
The majority of people with dementia live in the community, many with support from family and friends and in some cases with professional care supports. The partner becomes a care partner.
• Modern technology can enrich the lives of people with dementia simply by helping them to continue living independently at home, with dignity, confidence and security. Using a phone may become difficult as dementia progresses. Technology offers innovative methods of calling friends and family that can be particularly beneficial for individuals with impaired memory or cognitive impairment. Research the type of phone that best suits the family.
• As dementia progresses, the person may start wondering and getting lost. Technology is forever advancing and there are several devices that may help ensure the safety of the person with dementia. More information may be available on the internet.
• If a Person with dementia still carries a cell phone, tracking may be possible through the phone. Down load an app that works best in the area that the person and the care partner live in.
• Medical Alert tag, bracelet, etc. There are many forms of jewelry and tags for the person with dementia to wear. If the person should wander off the tag could help to alert the person who finds them, that the person has a medical condition.
• Some bracelets just have a disease engraved on them while others can be registered and engraved with the registration number, disease state, and a phone number to the company where there is a medical file on the person.
• At times it can be difficult or awkward when in public. People may not realize that the person has dementia. Business cards can be made up ahead of time to discreetly pass out stating, 'My husband/wife has dementia, thank you for understanding', which will help in having questions directed to the care partner.
• Keep an up-to-date photo of the person with dementia in case the person wanders off.
• The range of services provided by therapy dogs has steadily increased over the years. While everybody is familiar with guide dogs for the blind, there is a growing awareness of hearing assistance dogs and dogs that help people with limited mobility. The public is just becoming aware of the therapy dogs that are now used as a service provider for dementia. Pets are good for a person. Besides the obvious benefit of companionship, a well-trained pet may also help with anxiety and depression, or even offering health benefits such as lowering blood pressure and heart rate, reducing the stress hormone cortisol, and boosting levels of the feel-good hormone, serotonin.
• There are adult day programs for a person in the middle to later stages that can be of great benefit both to the person with dementia and the care partner.
Recognizing depression in someone who has dementia can be challenging because there are several symptoms that are common in both disorders.
• Change in the person`s emotions or behaviors when compared to their usual mood and behavior.
• Symptoms of depression in a person with dementia may not appear as severe as in someone without dementia. For example, a person with depression and word-finding difficulties may not be as vocal about their feelings. It can become difficult to express feelings and so the person may simply withdraw or appear listless.
• A person who has a personal or family history of depression or anxiety prior to being diagnosed with dementia may be more prone to experiencing a mood disorder such as depression.
• Apathy and Loss of Interest
• While a decreased desire to interact and participate in the activities occurring around a person can be a sign of dementia, it can also be a sign of depression. One way to tell the difference is to choose an activity that normally is enjoyable and notice how the person reacts.
• Tearfulness - Increased tearfulness and prolonged periods of crying can indicate depression.
• Decreased Appetite and Weight Loss - Depression in dementia can manifest itself in the person's eating habits. The person might say that nothing tastes good anymore even if it is the person's favourite dish. The person might take one bite and push it away. A decreased appetite can be due to many medical conditions, so it is important to see a physician if weight loss occurs for now reason.
• Change in Sleep Habits - Excessive sleep and difficulty getting to sleep can be signs of depression.
• Agitation and Irritation – A person with dementia who is depressed displays agitation and restlessness, and is more easily irritated with other people or their surroundings.
• Multiple Physical Complaints - Although complaints and concerns about several physical ailments can be a sign of depression, there may also be medical conditions for the physical complaints. If there is no obvious cause for the complaints, it's possible that depression may be present.
• Fatigue - Some people tire more easily when struggling with depression. They may complain of having no energy anymore.
Depression can be treated very effectively. If a person is experiencing feelings of depression, it's important to seek professional help.
• Physical Exercise can improve self-esteem, sleep habits and increase energy levels, of a person with dementia. Physical activity may also improve cognitive function.
• Meaningful Activities - For some people, part of depression is a lack of purpose. Giving a person the opportunity to do something that is important and related to their interests can be therapeutic for the person's emotional and mental health.
• Adding Structure to the Day - Having a routine for the day can give a person a feeling of control. A scheduled mental activity such as a game or a class may provide something to look forward to during the day. For those with mid-stage dementia, sometimes the structure of an adult day program can be beneficial.
• Therapeutic counseling can be very helpful in the early stages of dementia. There may be feelings of grief and loss after a diagnosis is confirmed, and counseling can assist in processing those feelings and to help develop ways to cope with the challenge of dementia.
• Social Interaction - A person with dementia may tend to isolate themselves, which can increase the possibility of developing depression and decreasing the mood that's already low. Although social interaction can be tiring for a person who is depressed, positive social stimulation can also benefit and encourage those with dementia and depression.
Prepared by: Jody McCoppen - October 2016