A Guide To Dementia - The Herbert Protocol

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What is Dementia?

Dementia is the collective term we use for a group of specific brain conditions that gradually reduce a person’s cognitive abilities. These conditions can affect memory, thinking, and behaviour.

Life With Dementia

Dementia can touch every part of your life, as well as the lives of those around you. If you’ve been diagnosed with dementia, it’s important to remember that you’re still you, even if you sometimes have trouble with memory, concentration, and planning. Everyone experiences dementia differently, so focus on what you can still do and enjoy to help keep a positive outlook. With the right help and support, many people live well with dementia for many years.

Dementia Terminology

Understanding dementia is important for compassionate communication and support. Dementia isn’t just about memory loss or a natural part of getting older, it’s a complex condition that impacts language, planning, behaviour, and even sensory perception.

Using the right terms, such as ‘dementia’, ‘Alzheimer’s disease’, or ‘symptoms of dementia’, matters. It helps to avoid reinforcing the myths and stereotypes that can isolate people living with different types of dementia, each experiencing unique symptoms.

Glossary of Dementia terms to know

Talking About Your dementia

Informing others about a dementia diagnosis can be challenging, but it’s important to approach the conversation with honesty and clarity.

Explain what this means and how it may affect your abilities over time. You may find some people treat you differently because they don’t understand dementia or want to help but don’t know how. Try to explain your diagnosis and suggest ways they can support you, like offering to drive you to a weekly activity if you can no longer drive.

Be prepared for a range of emotions and questions. It’s possible you may lose touch with some people due to changes in activities or difficulty maintaining contact, which can be hard to accept. However, you can meet new people through activity and support groups. Focus on the people who are there for you, and remember that seeking support from healthcare professionals can also be helpful.

Daily Life With Dementia

Living with the challenges of dementia symptoms can be distressing, but there are strategies to help manage daily life. Establishing a regular routine and keeping a weekly timetable on the fridge can provide structure. Place your keys in a noticeable spot, such as a large bowl in the hall, to easily find them. Keep a list of important phone numbers, including emergency contacts, by the phone. Set up direct debits for regular bills to avoid missing payments, and use a pill organiser to keep track of medications, your pharmacist can assist with this. Finally, ensure your home is safe and dementia-friendly.

Alzheimer’s

This is the most common type of dementia. Alzheimer’s slowly and progressively affects memory and thinking skills. Having the Herbert Protocol in place for someone with Alzheimer’s can provide reassurance that there’s a plan to help find them if they become lost.

Learn more about Alzheimer’s

Vascular Dementia

After Alzheimer’s, Vascular dementia is the most common type. It’s caused by reduced blood flow to the brain and can happen, for example, after a stroke. The Herbert Protocol can be especially helpful here by providing swift action in emergencies.

Learn more about Vascular Dementia

Lewy Bodies

Dementia with Lewy bodies is associated with abnormal protein deposits in the brain that disrupt the normal functioning of the brain. With this type of dementia, the Herbert Protocol can be a vital part of the care plan, ensuring that specific needs and behaviours are communicated to search teams effectively.

Learn more about Lewy Bodies

Other Rare Types

There are several less common forms of dementia, each with its own challenges. Whether it’s Frontotemporal Dementia, Parkinson’s Disease Dementia, or another kind, the Herbert Protocol offers a tailored approach, capturing the distinctive aspects of the condition.

Learn more about rare types of dementia

Creating a Herbert Protocol

The Herbert Protocol is a bridge between the complexities of living with dementia and the community’s efforts to provide a safe environment. By compiling a detailed profile, we can ensure that every person living with dementia is more than a condition or a case file, they’re seen for who they truly are, with their history, preferences and needs clearly understood and respected.

In the event of a disorienting episode, when the familiar may seem out of reach for someone with dementia, the Herbert Protocol is there to provide emergency services the details of the anchors in their lives, places, people, and memories that are essential in locating quickly.

The Herbert Protocol isn’t just a document; it’s a proactive step towards safeguarding the dignity and well-being of people living with dementia. It represents a community’s commitment to looking out for its most vulnerable members.

“When a family member or friend goes missing, it is an incredibly distressing time for those desperate to know where they are.

This fear and distress is exacerbated when that individual is living with dementia.

Completing and keeping an up-to-date Herbert Protocol form printed or saved and easily accessible is really important, but we know this can be challenging. MedicAlert is a service that can help, by storing information and working to keep it up-to-date and accessible for officers if it is needed.

As a MedicAlert member myself, I know this partnership will provide loved ones with peace of mind that Thames Valley Police can access important information quickly and save time in the search for those missing. I hope this offers reassurance to those living with dementia and their families.

The support of The McLay Dementia Trust makes the Safe and Found programme even more accessible.”

Chief Superintendent Mike Loebenberg from Thames Valley Police

Complete a Herbert Protocol Form

Create a profile with MedicAlert and complete the Herbert Protocol form within. You can manage and update it at anytime with ease.

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