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Dementia Awareness Week - The Changing Face of Dementia

Dementia Awareness Week - The Changing Face of Dementia

How Lifestyle Choices Could Reduce the Risk of Dementia

Dementia care has changed beyond recognition in the last 30 years. In part the sheer numbers of people whose lives are now affected by dementia has driven this. Dementia once was seen as a rare condition, one that affects older people. It was barely spoken about in its own right but rather was seen as an insignificant part of an older person’s care.

National Dementia Awareness Week runs from the 20th – 26th May. The aim, to raise awareness of the condition and the varying forms of support and care that is available in the UK. The number of people living with Dementia in the UK is forecast to increase to over 1 million by 2025 and over 2 million by 2051. There are over 40,000 people with early-onset Dementia (under 65) in the UK today. 

What is becoming more apparent is the number of people being diagnosed with Dementia in the 30’s, 40’s and 50’s, more and more young Dementia groups are being established and education around the misuse of alcohol and drugs as contributors to the illness becoming more important than ever.

Orwell Housing Association, who are currently the largest provider of extra care housing for older people in Suffolk, offers support and care, either in the community, or in one of the extra cares supported housing schemes for those who are living with Dementia. They offer either specially designed accommodation in a supportive environment or care in the community, if you choose to remain at home.

They are currently caring for a tenant who has early onset dementia. Due to the ongoing care and sensitive nature they have to remain anonymous.

‘Expecting your first child is usually an exciting time, and whilst new parents expect their lives to be altered, mental health would not be at the forefront of your minds.  But for this tenant being diagnosed with bi-polar, after the birth of her child was devasting.  Reports suggest this diagnosis was a contributory factor to an on-going problem with alcohol abuse.  

Due to her mental health there were various hospital admissions, from concerns of suicidal thoughts and reckless behaviours.  MRI scans later showed lesions on the brain, causing early onset dementia.  Having been diagnosed with these conditions unfortunately led to self-neglect, and isolation.  The tenant had trust issues and expressed that she ‘felt judged a lot of the time.’  

Living a lavish lifestyle of attending social events, travelling the world and maintaining her image was an everyday occurrence.  Family were actively a big part of her life and nothing was more important.  However, due to her diagnosis the tenant withdrew from the family and became less sociable.  To the outside world looking in it seemed appearance was no longer important to the tenant; but without trying to understand the situation and the tenants mind set it would be impossible to accurately conclude the tenant’s true views. 

When assessing her needs staff looked at how to engage with the tenant, to build a relationship of trust understanding, but this was a slow process.  Care staff were even ‘skill matched’ to the tenants’ interests and supported the tenant to access the local community, and to continue to re-establish bonds with her family members.      

This is just one story. One person whose early onset dementia was probably brought about by lifestyle choices. Alcohol and drug misuse are now becoming common causes of early onset dementia in people as young as 40.

Many people equate long term damage caused by alcoholism with liver failure and pancreatitis. People are surprised to learn that alcoholism also causes a form of dementia known as Wernicke-Korsakoff syndrome.

Wernicke-Korsakoff syndrome is entirely preventable. It’s believed around 7% of people over the age of 60 exhibit signs of Wernicke-Korsakoff syndrome due to alcohol abuse. Many of these people may believe they are beginning to experience Alzheimer’s disease. Wernicke-Korsakoff syndrome is similar to Alzheimer’s disease in that it is characterised by memory loss and other cognitive impairments. However other symptoms of Wernicke-Korsakoff syndrome include, anxiety and depression, inappropriate behaviour, paranoia, agitation and confusion.

Unlike Alzheimer’s disease, Wernicke-Korsakoff syndrome induced through alcohol abuse is much more likely to arise before you turn 65 years of age. Studies indicate that around 40% of cases involving early-onset dementia is caused by alcohol abuse.

So how important is getting the right care in place for someone diagnosed with dementia? We caught up with Hayley Cheshire, Head of Service, Older Persons at Orwell Housing Association.  “There is no doubt that being diagnosed with Dementia will have a big impact on your life. You and your family may worry about how long you can care for yourself, particularly if you live alone. A person living with Dementia who is living alone may have limited social connections, or reliable and regular connections with family and/or friends.” Said Hayley.

She added: “Early access to support and services is likely to mean better outcomes for both the person with dementia and their carer, and delays into supported care. These supports can lead to more participation and better quality of life for all.

The places in which people with dementia and their families and carers gain information, receive a diagnosis, access support and services, and conduct their daily lives are critical for influencing and improving their quality of life.

image of a tenants memory item These places include, the home, hospitals, extra care housing, support groups, government-funded services, private sector industries and businesses, local council environments, respite, short breaks and dementia friends.

Although a focus on supporting people to remain in their own homes is vital, it is not the only strategy for supporting people living with Dementia to maintain quality of life.

A more concerted focus on choice and person-centred care can provide clearly defined pathways and options from which people can choose to receive support. This can include remaining at home with formal or informal support, moving in with a carer or moving into supported housing care.

Some options can work well for one individual but prove to be stressful and unsuitable for another person. Make sure who is ever caring for the person with Dementia knows them by providing life-story books, telling staff about their likes and dislikes and providing belongings that bring comfort and have meaning for the person with Dementia. All these little things can bring comfort and a better quality of care.”