Understanding Dementia: A Guide for Caregivers and Families

In the UK, around 900,000 people live with dementia and this is expected to rise to 1.4 million people by 2040. World Alzheimer’s Day on 21 September every year is a global opportunity to raise dementia awareness and support people affected by the condition.

To mark the occasion, here’s a caregivers guide to understand the main types of dementia, how the condition impacts care, and we suggest practical coping strategies for carers and their families.

What is Dementia?

Dementia is not a specific disease but an umbrella term used to describe a range of neurological conditions affecting the brain. Symptoms gradually worsen over time and can affect memory, problem-solving, thinking, language and behaviour changes, and significantly impact on a person’s ability to carry out everyday activities.

The condition progresses through early, middle and late stages. GDS, FAST and CDR scales break dementia down further into 7 stages, ranging from ‘appears normal’ (stage 1) to ‘very severe’ (stage 7). Stage 4 is considered early dementia; stages 5 and 6 are the middle stage, while stage 7 is late stage dementia.

Four Types of Dementia

Around 19 out of 20 people with dementia have one of these four main types:

Alzheimer’s Disease is the most common among older adults and accounts for 60-80% of cases. For most people, the first signs of Alzheimer’s are problems with memory, thinking, language or perception. The causes are complex but a key part is the build-up of two substances inside the brain called amyloid and tau. When conditions in the brain aren’t right, these clump up and form tiny structures called plaques and tangles.
Vascular Dementia is the second most common dementia type and often occurs after a stroke or injury to small vessels carrying blood to the brain. Symptoms may vary depending on the person, cause and affected areas of the brain but during the early stages, a person may struggle to plan, organise, make decisions or solve problems, have difficulty following a series of steps, think slower and have problems concentrating.
Lewy Body Dementia (LBD) is caused by Lewy bodies which are clumps of protein in the brain’s nerve cells. Lewy bodies are named after FH Lewy, the German doctor who first identified them. Around 1 in 10 people with dementia have LBD. Symptoms, some of which are shared by Alzheimer’s and Parkinson’s disease, include visual hallucinations and motor issues.
Frontotemporal Dementia (FTD) is one of the less common types of dementia and affects personality, behaviour and language skills. It’s sometimes called Pick’s disease or frontal lobe dementia. ‘Frontotemporal’ refers to the two sets of lobes (frontal and temporal) in the brain that are damaged in this type of dementia. FTD occurs when disease damages nerve cells in these lobes. 30% of people with the condition are thought to have acquired it due to faulty genes that run in their families, but in two-thirds of cases, the exact causes are unknown.

How Dementia Impacts Care

1. Challenges in Daily Care

Communication Difficulties: Dementia affects a person’s ability to communicate because they have trouble remembering things, finding the right words or have difficulty speaking.
Behavioural Changes: The condition can affect a person’s behaviour, causing them to become agitated, anxious, aggressive, confused and depressed.
Daily Living Activities: Patients will need help with simple everyday tasks such as bathing, grooming, dressing, eating, and moving around.

2. Impact on Caregivers

Emotional Strain: Being a caregiver is extremely rewarding but can also be emotionally overwhelming. It’s common for carers to experience feelings of loneliness, frustration, anger, sadness, or guilt.
Physical Health: Daily caregiving can take its toll on a carers physical health due to stress and exhaustion.
Social Isolation: Reduced time for caregivers to focus on their own personal activities and social interactions.

3. Role of Professional Care

Home Care Services: A professional home care agency can play an important role to help manage dementia symptoms and support care clients and their families.
Respite Care: Temporary relief for primary caregivers allows them to rest and recharge.
Technology in Care: Tagtronics person-centred all-in-one homecare software can help manage care planning, set medication reminders, and track a patient’s health and well-being.

Coping Strategies for Caregivers and Families

1. Education and Understanding

Learning About Dementia: Resources are available for caregivers and families. For example, the Alzheimer’s Society have produced a practical guide for carers supporting dementia patients and provide several useful factsheets on their website.

2. Emotional Support

Support Groups: Joining caregiver support groups is a good way to share common experiences and get helpful advice. The Alzheimer’s Society run a dedicated Dementia Support Line on 0333 150 3456 and an online support community.
Counselling and Therapy: If you need extra support, professional counselling can help deal with the emotional and psychological stress of caring for a dementia patient.

3. Practical Care Tips

Routine and Consistency: Keeping a daily routine, such as bathing, dressing and eating at the same time each day can help reduce confusion and anxiety.
Communication Techniques: Speaking calmly and slowly, using simple language and distracting with activities can be effective ways to communicate with a dementia sufferer.
Safety Considerations: Making sure the home environment is 100% safe, removing hazards and adding safety features to prevent falls and secure exits.

4. Self-Care for Caregivers

Importance of Self-Care: Dementia may also change the relationships between the person and those closest to them. Caregivers have to balance supporting the person’s emotional needs with their own health and well-being.
Seeking Help: Recognising when to ask for help and using available resources. Citizens Advice signpost practical help for carers on their website.

If you’re a carer for someone with dementia, we’d encourage you to learn more about the condition, join support groups, and seek professional help and support as and when needed.

Since 2000, Tagtronics have helped hundreds of homecare agencies to care better using our all-in-one homecare software.

For a no-obligation demo of how our tech can support caregivers, call 01254 819205 or email howcanwehelp@tagtronics.co.uk.