Interview: Aoife, Head of Clinical

For Dementia Action Week, we interviewed our Head of Clinical, Aoife Mulcahy, with some of the most frequent questions families ask us about the condition.

My mum lives with dementia, does this mean I will in the future?

There have been studies published, but no actual evidence available to prove hereditary dementia. However, there is an increasing body of research that suggests certain mutations found in frontotemporal dementia may cause neurodegeneration, and more research needs to understand the role of proteins like tau in order to understand posssible therapeutic treatments.

More practical indictators like ethnicity could be strong. For example, certain countries in Latin America, such as Venezuela and Argentina, bear a higher burden of over 5% prevalence of dementia (Lancet, 2008).

It’s important to remember, this is research still very much in its infancy and points to probability rather than certainty. If you’re worried about dementia, like any aspect of your health or wellbeing, it’s important to keep your day-to-day health in check and, if needed, consult your GP.

How can I reduce the risk of developing dementia?

For preclinical dementia, the risk domains focus on tackling modifiable factors in the medical and lifestyle domain. The medical domain includes cardiometabolic, type 2 diabetes, blood pressure, cholesterol, depression symptoms, and head injury. However, it’s not accurately known which biomedical markers influence the clinical symptoms of Alzheimer’s disease.

The lifestyle domain includes cognitive, physical, social, nutrition and smoking. There are certain links in the lifestyle domain that are modifiable and are evidenced in relation to dementia risk. For example, higher fitness levels in young adulthood have been linked with better cognitive outcomes in mid-adulthood and better midlife fitness has been linked to a reduced risk of late-life dementia.

A diet that includes whole grains, poultry, fish, nuts and is generally low in saturated fats, red meats, sweets, and sugar-containing beverages, is regarded to be protective against cognitive decline.

In addition, smoking and excessive drinking, pesticides and heavy air pollution have been evidenced to reduce cognitive functioning.

Prevention strategies, such as having different types of social relationships and engaging in cognitively stimulating activities in late life activities like reading, playing puzzles and card games and attending concerts can lower the risk of dementia.

Increasing levels of education in young adulthood and teaching avoidance of all potential dangers to brain health can help reduce the effects of future decline in older adults.

My dad’s dementia has become worse, he is starting to refuse care from the carer, how should we handle this?

This is a serious situation. As a family, you really need to look at making an intervention. Refusing care is often a natural response to the family putting arrangements in place.

However, it can also be an indication that a person’s memory is getting worse and, particularly for a loved one living with advancing dementia, this is something that requires your GP to be notified for assessment.

Putting care in place is fundamental to helping your loved one live well despite dementia. As the condition advances, it’s important that they’re already comfortable with their routines. So, my advice to you is simple. Don’t bury your head in the sand, get the information, expertise and support you need to get everything arranged as quickly as possible.

What charities can I contact for support and help?

I’ll start with the ones most of us have heard of - Dementia UK and the Alzheimer’s Society. These organisations can provide a huge amount of valuable information to help a loved one living with dementia. The latter is also able to provide more practical support, such as a helpline, an online forum, and community services.

Both of their websites cover a wide range of issues relating to dementia, as well as news on the latest research and new initiatives to help people live better with the condition. I’d recommend keeping your finger on the pulse of best practices and what’s going on in the area.

Beyond those, don’t forget about the Carers Trust, Carers UK and Turn 2 Us, because carers and families of those living with Dementia need support too.

Do I need to get advice about my will?

To arrange a will, a solicitor is the best place to start. They can also help to put in place ‘power of attorney’ and register this with the court of protection.

This means that, as a family, you’re able to take control of any legal decisions on behalf of your loved one. Some other ways of giving your mum or dad control over their future, is for them to create an ‘advanced statement’ or ‘advanced decision’.

What are the symptoms of dementia?

Remember, don’t jump to conclusions or start worrying prematurely, as there’s no clear cut rule to say memory problems are going to be as a result of dementia. However, it’s essential to check with your GP just to make sure. The earlier you get a diagnosis for dementia, the more impact you’re likely able to have on slowing its advance.

Can dementia be effectively managed or is it an inevitable condition?

By definition, dementia is degenerative so, in that sense, there is an inevitability that symptoms will get more acute over time. Indeed, despite lots of research, which has started to bear progress, there are currently no curative treatments for any form of the condition.

But in terms of medication that can help you live a better life for longer, there is certainly help available. To get an idea of whether these are an option, again, your GP should be the first port of call.

In terms of other forms of support, online stores such as the Alzheimer’s Society Shop, have a huge range of products that can make daily life that little bit easier.

Is a care home better than care at home for supporting someone who’s living with dementia?

No, it’s very likely that staying at home is the better option and, in fact, it is the most popular option. Alzheimer’s Research UK has found that 61% of those living with dementia receive care in the community.

A person’s own home environment will extend their ability to stick to their daily routine and allows them to stay close to their social networks - something that there is increasing evidence to show may slow the onset of the condition.

For the later stages of dementia, or for Lewy body-related dementia, nursing care is likely to be the only option. This will mean moving into a residential home.

Why are there different types of dementia? What are the differences?

I think it’s important to start by saying dementia isn’t a disease, it’s an umbrella term that refers to a collection of similar or related symptoms to do with neurological degeneration. As you say, there are different types of dementia. However, regardless of the specific disease or condition, often the symptoms can be similar.

The first type to mention, as it’s the most common, is Alzheimer’s disease (AD). AD largely impacts the hippocampus - this is the part of the brain that remembers the small things in life. With AD, it’s likely you’ll become increasingly forgetful. You might not remember names, you might not remember places, or you might start to find it difficult to recall recent events or activities.

Unfortunately, as AD is a progressive disease, this is just the start of a difficult journey. Symptoms will become more acute over time - with patients struggling with concentration, as well as understanding spatial awareness, depth perception and general orientation. Someone with middle to late-stage AD can become increasingly difficult to maintain a conversation with, as their train of thought can be so easily lost.

The timeframe on the progression of AD varies depending on a number of factors, some of which we’re aware of, some of which we’re probably not. It’s likely genetic makeup, diet and living an active lifestyle are all important. However, late-stage AD can be extremely distressing - with significant difficulty to gauge reality or engage in conversation. Ultimately, with AD, dependence on care and support for nearly all aspects of daily life will become necessary over time.

The second most common form of dementia is vascular dementia, affecting around 150,000 people in the UK. This is where the blood supply to the brain is reduced, and with it both oxygen and the vital nutrients required to maintain a healthy mind. Without this vital ‘fuel’, brain cells can’t survive and, as they die, general cognition is impacted - such as memory, thinking and reasoning.

Other forms of dementia are Lewy Bodies, dementia from Parkinson’s, Creutzfeldt-Jakob disease and Frontotemporal dementia (commonly known as Pick’s disease). For more information on each of these, it’s worth visiting the Alzheimer’s Society page on the different types.

Aoife is Head of Clinical at Elder

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