Living Positively with Dementia – Guidance for Families and Friends

By Laura Pratt – 11th December 2023

Over the last twelve years working in healthcare and specifically in dementia care I have consistently been told by healthcare workers and families that they need more support and information when a family member receives a diagnosis of dementia.  In order to help I have put together some guidance for families and friends that I hope will help you to positively support your loved ones on their journey with dementia.  Over the next number of weeks, I will put up information that will start with basic information on the common types of dementia followed by risk factors, cognitive symptoms and behaviour symptoms and how to manage them.  This first section is advice on how to deal with the initial diagnosis and the common types of dementia

Start of the Dementia Journey

Receiving a diagnosis of dementia is a life changing experience not only for the person with dementia but for everybody close to them.  There may be feelings of anger, sadness, disbelief, loss or even relieve to finally have an explanation for what has been happening.  You may suddenly find yourself in the situation where you have to process a lot of information about something that you never expected or thought about and how it is likely to affect the person and what to expect in the future.  There can be anxiety about how to cope and who will help and what needs to be done.  It will take time to come to terms with the diagnosis so do not rush into anything such as making immediate major decisions and changes.  Take time to process the information and ask for help.  If there is something that you do not understand talk to your GP and get guidance on what local services are available.  Your public Health Nurse will be a central point of contact for information, support and services so it is useful to make contact with them as early as possible.  

Receiving a diagnosis of dementia does not mean that the person is no longer able to carry on with their life as normal.  Continuing routines is vital to maintain cognitive abilities and should be encouraged.   Supporting the person to continuing to live as they have always done will help to reduce their anxieties about the diagnosis.  They too are processing what has happened and a calm supportive environment will give them the time and space to discuss how they feel and allow them to start looking at what they want to put in place for the future.    If the person wants to talk about their diagnosis they should not be discouraged as this can have a very isolating effect and engender the idea that dementia is something that should not be talked about.  Stigma around dementia is one of the most limiting factors for people living with dementia. 

Set up a family and friends support group not only for the person with dementia but also for the person who is their primary carer whether it is a spouse/partner, child, sibling or close friend.  One person trying to manage everything can be very difficult to cope with and frequently results in a deterioration in their own physical, mental and emotional wellbeing. 

Do not forget the person, which sounds like an impossible thing to do, but there can be such an emphasis on the dementia that the person can get lost.  Getting a diagnosis of dementia does not change who the person is and does not diminish their right to decide on how they want to live.  The person should be at the centre of all decisions about their care and establishing how this should proceed at the early stage will be of great value when they no longer have the cognitive abilities to make these decisions at the later stages.  Early diagnosis allows the person to make decisions about their future care and is a support for families when these decisions need to be made. 

I cannot emphasis enough the benefits of asking for help and support.  Too often people are reluctant to ask for help not realising how important it is for everyone to get some rest or a break. Being proactive can prevent difficulties further down the road, so make that call whether it is to get professional healthcare support or just to arrange to meet up with a friend for a chat.  

Dementia is a journey for everybody involved and like all journeys there will be bumps along the road.  Like all journeys there needs to be planning and at time detours and the occasional stop along the way to refill the tank and ask for directions.  Most importantly remember to enjoy the wonderful experiences that are a part of all journeys which become an invaluable part of our own life story.

What is dementia?

Dementia is not a specific disease but is rather a general term for the impaired ability to remember, think, or make decisions that interferes with doing everyday activities. Alzheimer’s disease is the most common type of dementia. Though dementia mostly affects older adults, it is not a part of normal aging. It affects memory, thinking, orientation, comprehension, calculation, learning capacity, language, and judgement. Consciousness is not affected. The impairment in cognitive function is commonly accompanied, and occasionally preceded, by changes in mood, emotional control, behaviour, or motivation.

Understanding Dementia

The Irish National Dementia Strategy seeks to progress the dual and overarching principles of personhood and citizenship by enabling people with dementia to maintain their identity, resilience and dignity. 

Research has shown that quality of life as experienced by the person with dementia may not always align with the people they are living with and who are supporting them.   There is a tendency to rate quality of life lower for the person with dementia based principally on the deterioration of ability to engage in activities of daily living.  However, for the person with dementia this is not always how they view their life and situation.  This difference in perception can lead to a lack of understanding of the needs of the person with dementia and how they can be met. 

To support the person living with dementia we need to understand how dementia is impacting on their experience and understanding of the world around them.  To help with this it is useful to look at the cognitive symptoms that may arise and the impact this can have on behaviour.  If we understand why somebody is doing what they are doing it will help us to support them effectively.  It is important to understand that part of supporting the person living with dementia is to accept that they are operating in a way that works for them. Our role is not to force changes to but to help to manage situations that accommodates everyone involved

Types of Dementia

The most common types of dementia are:

• Alzheimer’s disease
• Vascular
• Mixed
• Dementia with Lewy Bodies
• Frontotemporal

Alzheimer’s Disease

Alzheimer’s disease is the most common and well-known cause of dementia. Scientists believe Alzheimer’s disease prevents parts of a cell’s factory from running well. They are not sure where the trouble starts. But just like a real factory, backups and breakdowns in one system cause problems in other areas. As damage spreads, cells lose their ability to do their jobs and, eventually die, causing irreversible changes in the brain.

Alzheimer’s disease is recognised by the build-up of proteins on the brain which forms plaques and tangles that stop the brain working as it should.

Beta-amyloid plaques form tangles outside the brain cell which interrupts the connections between cells

Tau tangles occur inside the cell which degenerates the cell resulting in cell death.

Beta-amyloid and Tau are formed from natural proteins in the body.

The role of plaques and tangles in Alzheimer’s disease

Two abnormal structures called plaques and tangles are prime suspects in damaging and killing nerve cells.            

1. Plaques are deposits of a protein fragment that build up in the spaces between nerve cells.
2. Tangles are twisted fibres of another protein that build up inside cells.

Scientists do not know exactly what role plaques and tangles play in Alzheimer’s disease. Most experts believe they somehow play a critical role in blocking communication among nerve cells and disrupting processes that cells need to survive.

It’s the destruction and death of nerve cells that causes memory failure, personality changes, problems carrying out daily activities and other symptoms of Alzheimer’s disease.

One of the parts of the brain that gets affected early is the Hippocampus.  The hippocampus has the role of developing new memories.  This seems to explain why the short-term memory is one of the first areas to be affected.  The hippocampus is not where memories reside so the long-term memory remains functioning for longer.  As a result, the person may not remember what happened today but will have good recall of long-term memories.

While short term memory loss is often one of the first symptoms of this disease, there are a range of early signs and symptoms including:

• Getting stuck for words
• Misplacing things regularly
• Losing track of time
• Changes in mood and behaviour
• Difficulty finding the way even in familiar places

Vascular Dementia

Vascular dementia is the second most common type of dementia and it occurs when the blood supply to the brain is damaged.   Vascular dementia is a decline in thinking skills caused by conditions that block or reduce blood flow to various regions of the brain, depriving them of oxygen and nutrients. 

In vascular dementia, changes in thinking skills sometimes occur suddenly after a stroke, which blocks major blood vessels in the brain. Thinking difficulties may also begin as mild changes that gradually worsen as a result of multiple minor strokes.  The strokes can be so tiny that no-one notices them happening, but the person may get worse quite suddenly and then not change again until the next stroke happens. As a result, the progression of this dementia is often described as happening in steps rather than steady gradual changes, such as in Alzheimer’s disease.

A growing number of experts prefer the term “vascular cognitive impairment” (VCI) to “vascular dementia” because they feel it better expresses the concept that vascular thinking changes can range from mild to severe.

People with vascular dementia can often experience the following symptoms:

• Difficulty concentrating and communicating
• Memory problems
• Depression

Dementia with Lewy Bodies

Lewy body dementia is a type of dementia that shares characteristics with both Alzheimer’s disease and Parkinson’s disease. Like Alzheimer’s disease symptoms progress gradually over several years. The person will experience many of the signs and symptoms of Alzheimer’s disease and may also experience muscle stiffness, trembling of the limbs and a tendency to shuffle when walking. They may also experience hallucinations (seeing things that are not there) and fall asleep during the day and then not sleep at night.

Frontotemporal Dementia

Frontotemporal dementia is a rarer type of dementia which is caused by damage to different areas of the frontal and temporal lobes of the brain.  During the early stages, a person’s memory may be fine but their personality, behaviour and language skills can change.  The progression of this dementia is unpredictable and in the later stages’ symptoms are similar to those of Alzheimer’s disease.

This dementia often causes a loss of insight and so the person may say and do things at the wrong time and in the wrong place. This can be embarrassing for family members and it is important to know that there is a physical cause for these changes. The progression of this dementia is unpredictable and in the later stages symptoms are similar to those of Alzheimer’s disease.

Fronto-Temporal Dementia can be divided into two main classifications