Jim* was diagnosed with Alzheimer’s disease almost 20 years ago and, with the support of his family and a network of carers and services, is still able to live at home on his own.
His daughter, Ingrid*, says her father has a wonderful team of carers, which has been central to Jim to remain living at home. Keeping Jim physically, mentally and socially active has also been an important factor.
‘We are quite fortunate. I think it's partly attributed to my sister being persistent in him keeping involved in activities. We got him into a busier schedule than what he had before.'
'He learned bingo, table tennis, exercise class and indoor bowls. We found he’s obsessed with Find-A-Word puzzles! It goes to show that you CAN teach an old dog with dementia new tricks!’
Jim’s family and carers would often take him out to their local seniors’ social club so that Jim could socialise and take part in the clubs’ activities. But when Jim’s area went into lockdown due to COVID-19, all social club activities were cancelled. During this time, Jim’s family devised activities for him to do at home to keep him busy. Lockdowns due to COVID-19 have resulted in rapid declines in cognitive ability, worsening of dementia symptoms and/or onset of new symptoms, and increased rates of depression and anxiety among people with dementia (see this article for more information). Ingrid says keeping Jim active during this time was important for his health and wellbeing.
‘I went to the charity shops, I got him puzzles. I got him a bingo thing for home. So, he would call out the numbers himself with someone. We also got board games like Connect 4 and snakes and ladders, and dominoes. And quoits,’ Ingrid says.
‘We just increased what is available at home… keeping [Jim] active that way. But yes, he has been getting into jigsaws…He got really fixated. He would do them for hours.’
As Jim lives alone he was still able to have formal carers visit during lockdown periods. The family also made sure that Jim was involved with household tasks like emptying the dishwasher, hanging out his washing, checking his letterbox and preparing food.
Ingrid says that when her father was first diagnosed, the biggest challenge was knowing what services are available so that he can remain living at home for as long as possible. As Jim has a Department of Veterans’ Affairs (DVA) gold card, they found that he has access to a range of entry level home care services, including domestic assistance, respite care and home and garden maintenance through DVAs programs (see Dementia among veterans for more information on veterans with dementia).
Ingrid says that small changes made to the family home has also greatly improved her dads’ independence and quality of life.
‘So we've ordered equipment [for Jim] like a rail for his bed…one of those mats with the alarms so when he stands up at night, [the alarm] will tell the carer. They had put in rails like for the stairway, outside… and the front tiles outside, were a bit slippery. So putting a coating on there and painting, you know, white line on the steps… it's been good [for Jim].’
‘If it gets to the point where he is… needing 24/7 care…or he is more bed bound, and we can't handle it, and we can't get carers to come to his house, then there is the different version of a residential aged care we will try to find for him, where they only have about 5 clients and it’s more like a normal house.’
When Jim was first diagnosed, Ingrid says learning more about their fathers’ condition was helpful.
‘So we [my sisters and I], back in the early days, we did a course [on dementia]. The elderly person had their group and then we went with the carers group… [It was] good learning more about dementia.’
*This case study is based on an interview with a family member of a person with Alzheimer’s disease, which is the most common form of dementia. This personal account is not necessarily representative of the circumstances of other people with dementia or the challenges they may face, but it is our hope that it will give readers a greater awareness and understanding of the diversity of people’s experiences with dementia.
Names and identifying characteristics have been changed. Images are not representative of individuals in the story.