The sad burden of dementia’s impact on families

It’s estimated that 250 people develop dementia every day in Australia. And higher incidences of early onset dementia (EOD) are occurring in the statistics.

Early onset dementia is a group of symptoms that affect people under the age of 65, for which there is no cure or medication to prevent symptoms. It’s estimated there are currently 26,443 Australians living with early onset dementia, which will grow to 42,000 over the next forty years.

Dementia is an umbrella term and there are several different types of dementia, with Alzheimer’s disease, vascular dementia, frontotemporal dementia and Korsakoff syndrome being the most common types diagnosed in this age group.

The upsetting symptoms include forgetting information, confusion, noticeable personality changes, speech and vision problems and, quite often, strange reactions and mood swings.

Additionally, a large number of people with dementia can experience hallucinations and almost half experience depression and anxiety.

Unfortunately, brain function is hampered so greatly that everyday life and daily living activities are affected. Needless to say, it can be devastating for those living with it and for those witnessing it – especially as most people assume it’s an older person’s disease.

Disease progression

As dementia develops, the inevitable worsening of symptoms gradually makes life harder and in almost all cases, requires the person to have full time care. This can be an enormous task for one person (such as the partner or adult children) and a residential facility is often sought.

It’s even more impactful because most people diagnosed with EOD are likely to be working full time or supporting and raising a family at this stage in their life. This significantly changes the roles and lifestyle of the family members of the person with dementia.

Effects on families

Naturally, most family members don’t hesitate to undertake the role of carer for their loved one with dementia. But caregiving can be an overwhelming and challenging role and lead to stress and feeling burdened.

Partners of people with dementia can also end up mentally exhausted with little time left to do the things they love or see friends and enjoy social occasions.

In addition to the impact on family members’ wellbeing, there’s also financial difficulties to consider. At some stage, it is likely the person with dementia will be unable to work, make legal or financial decisions or manage money. Which all has an enormous bearing on finances, especially with bills and a mortgage or rent to pay, and children to send to school.

Health care costs also begin to mount. The carer may find him or herself needing to take more carer’s leave, reducing working hours, or even giving up work. There’s also the added cost of residential care when the time comers.

Plan ahead

If your loved one has been diagnosed with dementia, some of the ways in which you can ease the burden are:

  • join a support group
  • connect with reputable organisations and associations
  • prepare the home to accommodate symptoms
  • incorporate regular, appropriate exercise
  • contact the National Dementia Helpline 1800 100 500.

It’s also wise to plan ahead: start saving, make decisions while the person is able to legally make sound decisions (particularly when it comes to any financial, legal or medical treatment) and set up an Enduring Power of Attorney.

Like any terminal illness diagnosis, this can come as quite a shock for everyone. But there are options to help safeguard you and your family in case the worst happens.

Category: FamilyHealthWellness

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Article by: Defence Health