Specific challenges for people with early-onset dementia

1. Employment and early-onset dementia

Most people with early-onset dementia are still working when they are diagnosed. This raises several issues that need to be managed.

• It may take a while for symptoms to be recognised (and therefore the condition diagnosed), because their activities are split between work and home, and their symptoms are not being observed long enough by a single person. In addition, abnormal behavior at home can easily be dismissed as work-related stress; while abnormal behavior in the workplace can be put down to stress in one’s personal life.
• Someone diagnosed with early-onset dementia may wish to, or be financially obligated to, continue working as long as possible. This raises issues such as how much one needs to reveal to an employer and what sort of protection one has against discrimination. Full disclosure of one’s condition would normally be required for full protection under the law.
• In the early stages of dementia, work activities may be able to be carried out to the same, or close to the same, capacity as before the condition. However, a person’s ability to perform certain tasks will deteriorate over time. Employers are required to make ‘reasonable adjustments’ in such circumstances but to do so they need to be fully informed of the condition of the employee with early-onset dementia.
• It is hard to predict how work colleagues will react to the diagnosis. Some people find it hard to cope with things they don’t understand. In these cases, communication and education can help.

2. Family and early-onset dementia

• People with early-onset dementia often still have dependent children. They therefore have financial obligations, and any number of home responsibilities such as transporting children to sport and school commitments, shopping, cooking, gardening and the like
• The partners of people with early-onset dementia are often also in the workplace and with family responsibilities. For people diagnosed with dementia later in life, this partner is often the principal carer, a position far less easy to manage earlier in life
• Because of their stage of life, people with early-onset dementia may be helping to care for aging parents. Thus the ongoing care of more than one person needs to be considered.

3. Caring for someone with early-onset dementia

• The psychological effects of a dementia diagnosis always have to be monitored and managed. However, they can be more severe for people with an early-onset diagnosis. After all, they are progressively losing their skills, abilities, and possibly livelihood and memory, far earlier than would have been anticipated.
• Home Care is obviously the preferred option, rather than residential care. Such care may be far more affordable and accessible than you realise. CareAbout can answer any questions you have about Home Care in your area.

If you’re looking for care and support for your loved one, it’s important that you take time to consider all options. Home Care is one of those options. For many people with dementia, continuing to live in their own, familiar environment will be the best tonic for them.

Symptoms of early-onset dementia

The earlier a diagnosis of early-onset dementia is made, the quicker planning for the future can start. This is critical given the likely financial and family commitments that the person will have. However, it can often take longer to diagnose early-onset dementia than later dementia because the condition is not expected and therefore symptoms can be brushed off as something less serious.

The symptoms of early-onset dementia are very similar to those of later dementia. However, memory loss is usually less prevalent early on; while movement, balance and coordination-related issues are most common.

If you have any concerns at all about your behaviour, or that of a loved one, it would be useful to familiarise yourself with the Symptoms of dementia.

Support and care

If you’re looking for care and support for your loved one, Home Care can be a fantastic option. For many people with dementia, continuing to live in their own familiar environment will be the best tonic for them. CareAbout can match you with a Home Care provider that specialises in dementia care, with dementia-trained staff who meet your individual needs.

If you’re considering an Aged Care Home, make sure you look for Homes that provide specialist dementia care. CareAbout has a free online tool to compare the specialities of different Aged Care Homes and their fees.