Preparing for a diagnosis of dementia – we prepare for so many life changes, why not this?

Preparing for a diagnosis of dementia – we prepare for so many life changes, why not this?

We anticipate and prepare for so many things in life, such as birth, growing-up, going to school, university, joining the workforce, hormonal changes associated with growing up and growing older – not all of these impact on everyone. Alzheimer’s Research UK Data Statistics Hub estimates that there are currently 850,000 people in the UK living dementia. This is due to rise to one million by 2025 and two million by 2050. In 2015 a report published by Alzheimer’s Society states that dementia costs the UK £26 billion a year.

Dementia is not a natural part of growing older, but risk increases with age, and we have an increasingly aging population 7.1% of all people over the age of 65 have dementia, a person’s risk of developing dementia rises from one in 14 over the age of 65, to one in six over the age of 80. If we are planning and expecting to live longer, we should also anticipate the possibility of dementia within later life. Awareness, anticipation and preparation can maintain quality of life, prevent isolation, and maintain social networks – and save money for health and social care.

In a previous blog I wrote about supporting my mother as she was diagnosed with Mild Cognitive Impairment (MCI). Since then, as to be expected, her cognitive function has continued to decline, so her diagnosis is now vascular dementia.

The new diagnosis was made after an annual review, where my mother’s test scores had only dropped by 1 point but managing everyday life had become more difficult.

As with her previous diagnosis, there were increasing signs of cognitive decline which only those that know a person well would notice: no longer playing scrabble and switching to jigsaws; jigsaws switched from 1000 pieces+ to 250 pieces; not being able to work out what the time will be in half an hour, or what time to be ready if you being picked up 1 hour before an event (although, to be honest she has never been great at being on time for anything). The more obvious signs were left over food stacked in the dishwasher or a waste paper bin. This being said her life, friends and social activities remain unchanged.

As I always say, I am not a clinician, merely someone who has been fortunate enough to work with clinicians and social care specialists in the fields of cognitive function and early intervention and prevention. Because of this I may be more attuned to early signs of decline, and better informed about 1) the likely process of decline 2) the importance of maintaining personal networks of support and 3) available supportive technology.

Barnsley Metropolitan Borough Council have consistently impressed me with their forward-thinking approach to offering residents support and a range of telecare solutions as a response to social care needs.

It was at a meeting in Barnsley that I met Kevin Marsch as he was receiving feedback on a community trial for myhomehelper

I was so impressed with the feedback, that I purchased this assistive technology for my mother when I started noticing signs of cognitive decline. Other purchases to support her to live independently:

    • Home delivered meals
    • A personal alarm
    • A wind-up timer
    • Extra house keys for family
    • Carer support
    • A photophone
    • An account with a local taxi company
    • A diary

Support Technology

This has been a gradual process of encountering problems, and sourcing solutions, some of them less technical than others.

The result of all of these supportive items is that my mother is still living independently, is confident, sociable and has a very busy social life. Although I am often a long distance away I am confident that someone will see her every day. She is taken for a long shopping trip every week where she can choose and buy what she wants, and feel in control of her life.

On the occasions when she accidently unplugs or switches off myhomehelper, she will ring me and ask for help, as she does not have the ability to remember to plug in the device or press the on button. Without it working she does not know what day of the week it is, will use here paper diary only – opening it on any page and crossing out dates that are wrong(!!), will not know if the time is night or day, and will completely loose track of all her daily activities. I am sure without the support we have in place that anxiety and stress from not understanding what is happening around her, and not feeling confident in accessing help when she needs it would have resulted in her cognitive function declining, possibly more TIAs and a decision to seek residential care.

Early intervention and preparation saves money. None of the supportive steps I have taken have been free, but they have and will continue to cost considerably less than residential care. But more importantly, my mother is happy to be in her own home, surrounded by friends, and involved in community activities. What is the point of extending length of life without maintaining quality of life?

I have no financial interest in any of the technology or companies mentions and do not have any commercial relationships with those companies.

Preparing for a diagnosis of dementia – we prepare for so many life changes, why not this?

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