It can be very difficult to come to terms with the diagnosis of dementia - for both the person who has been diagnosed and their family and friends. It may not be physically painful and it may not affect appearance or mobility, but over time, dementia can change an individual's personality unrecognisably and - sadly, irreversibly.

The most common change associated with dementia is memory loss. This can become so severe for those living with the condition that they may need daily care to do basic things like eat, wash and go to the toilet. People with dementia are vulnerable to rapid mood changes, anxiety, depression and even bouts of aggression. This is because memory loss can be scary and disorientating. This in turn can be sad and frustrating for friends and relatives, who must learn to cope with massive changes in their lives.

Many people in Britain live with dementia. By the end of 2015, the Alzheimer's Society in UK estimate there will be around 850,000 people in the UK with varying types and stages of the co# ndition. Worryingly that number is expected to double over the next 40 years in UK. Even though    m/dementia is most common in older people, it can also develop in younger people.

 

It was estimated that over 3.7 million people are affected by dementia in our country in 2010. This was expected to double by 2030. Despite the magnitude, there is gross ignorance, neglect and services are scarce for people with dementia and their families.

We know that dementia is not part of aging and it is caused by a variety of diseases. We now have a range of options to treat the symptoms of dementia and offer practical help to those affected. It is estimated that the cost of taking care of a person with dementia is about ₹43000 annually; much of which is met by the families. The financial burden will only increase in the coming years.

The challenge posed by dementia as a health and social issue is of a scale we can no longer ignore. India as a nation is progressing fast as an economic power in the world. We as a nation should value the contribution by our senior citizens in building the country. We have the responsibility to respond to the needs of people with dementia and their families. There is a serious call by professionals and organisations for government, policy makers and all health care providers to recognize dementia as a health and social welfare priority and a need for the development of a National Dementia Strategy.

In the absence of any structured services, counselling is recognised as an effective tool for helping make life as normal as possible for people in the early stages of dementia. It is also an excellent support line for carers struggling to cope with big changes and new responsibilities.

The condition explained

The condition itself is not a disease, but a collection of symptoms caused by one of a large number of possible brain diseases. The most common disease that causes dementia is Alzheimer's disease, a condition that damages and kills brain cells. Dementia can change the way a person thinks, feels, functions and communicates. The most noticeable symptoms of dementia are severe memory loss, behaviour changes, mood swings and disorientation. It is a progressive condition, which means that it gradually gets worse over time.

Types of dementia

There are thought to be approximately 100 different types of dementia, and each type is caused by something slightly different. The most common types of dementia include:

 

• Alzheimer's disease - caused by a build up of tissue in the brain.
• Vascular dementia - caused by blocked arteries leading to the brain.
• Mixed dementia - a combination of Alzheimer's and vascular dementia.
• Lewy body dementia - a build-up of protein deposits in nerve cells.
• Front temporal dementia – caused by damage to the temporal and frontal lobes of the brain.
• Early-onset dementia – this describes the condition that affects people who are under the age of 65.

 

There are a number of other less common causes of dementia, they include:

• Creutzfeldt-Jakob disease
• heavy alcohol abuse
• HIV
• Huntington's disease
• multiple sclerosis
• motor neurone disease

 

What does it feel like?

Caring for a loved-one, who has the condition, or is exhibiting signs of dementia, can at times be frustrating.  It's often difficult to know what they want, or what's going on in their minds because often, they themselves do not know. Without a functioning memory, how are they supposed to make sense of the world, or even their own thoughts and feelings?

Think about your own memory for a moment. 'Memory' is not just remembering what you had for dinner yesterday - it stores everything. Without memory, how would you be reading these words? Reading is one of those basic skills we hardly give any thought to - just like speaking, knowing when to cross a road, and telling the time. In fact, everything we do in life requires a certain amount of skill and prior knowledge. People with dementia often struggle to recall these vital memories. They lose their grasp on reality, find it difficult to carry out basic tasks and eventually even lose their sense of 'self'.

One U.S. psychologist, P.K. Beville, PhD, drew on his 20 years of experience working with dementia patients to develop the 'Virtual Dementia Tour™'. This is a simulation that allows healthy people to see the world through the eyes of a person with dementia. This tour is used in a number of dementia care centres across America to help carers understand what their patients are going through.

The experience involves participants having their senses muffled with certain props, including red-tinted goggles, shoes filled with corn and binding around two or three fingers. They are then asked to complete five simple tasks. These tasks include pairing up socks, putting toothpaste on a toothbrush and putting a belt through a pair of trousers. According to one journal, 146 participants who tried the simulation came away with a stronger sense of empathy and a new understanding of the plight faced by individuals living with dementia. 

How to recognise signs of dementia

Recognising signs of dementia early on means a quick diagnosis can be made. Once diagnosed, it is possible to start making plans for the future. This can include sourcing medication, seeking counselling and putting money aside for future care.

If you're worried, you can look out for these 10 warning signs of dementia:

1. Memory loss

Most of us have probably walked into a room and forgotten what we went in there for. Forgetfulness is a common trait - especially in a fast-paced world. However, when forgetfulness starts to affect the ability to lead a normal life, a visit to doctor is recommended.

2. Difficulty with day-to-day tasks

Memory loss can make it very difficult to do what most of us see as basic tasks, like cooking dinner, washing and cleaning the house.

3. Problems with language

People with this condition often forget words and lose track of what they are saying.

4. Confusion over time and place

It is not uncommon for individuals living with the condition to get lost in their own street even if they've taken the same route for years.

5. Inability to make judgements 

Making good judgements - such as whether it is safe to cross a road - requires quick thinking and common sense. Both of which can be obscured by dementia.

6. Problems with abstract thinking

Sometimes to understand something - like how to use a phone, we have to be able to remember other rules first - such as what numbers mean. In reality, numbers are just little squiggles. It is only because we learn what they mean at a young age that we can decipher them as adults.

7. Losing things

People with dementia frequently put objects in places they clearly don't belong (e.g. books in the fridge, dishes in the wardrobe etc.). This makes it easy for important things to become lost and adds to the confusion and frustration of the condition.

8. Mood changes

Living in a world where nothing seems to make sense can be extremely distressing. With everything changing and shifting around you - how are you supposed to know what to believe? People with dementia often experience great surges of emotion, such as anger and sadness. These can lead to emotional outbursts.

9. Personality changes

Those with the condition often lose a grip on who they used to be. Dementia can also result in a loss of inhibitions, leading to socially inappropriate/overfamiliar behaviour.

10. Loss of motivation

Those with dementia can become passive and lose interest in things that they used to enjoy.

Dementia support

Psychotherapy and counselling can give much needed dementia support by providing people with the opportunity to speak in confidence about the issues that might be troubling them. Talking therapies can help people come to terms with a dementia diagnosis, identify ways to live with the condition and it can also help with related symptoms of anxiety and depression.

Cognitive behavioural therapy

Cognitive behavioural therapy (CBT) is a type of psychotherapy that tries to change how people think (cognitive) and what they do (behavioural). These changes can have a positive impact on the person with dementia's life. It’s a popular method to treat anxiety and depression, and there is more and more evidence that suggests it can help with dementia and depression.

CBT typically lasts between five and twenty sessions. A carer can join the sessions to take on board ideas and techniques for use at home.

How can dementia counselling help?

Counselling is an effective tool for dementia support. The person with the condition and their family can come to terms with a traumatic and life-changing diagnosis.

There is plenty of advice available for families dealing with dementia. The problem with advice found in books, leaflets and on the Internet, is that it is very general. How do you know that it will apply to you? Dementia is inconsistent by nature - what works one day might not work the next. For this reason, it can be beneficial to have an expert work with you to get to grips with the unique patterns of your or your loved one's condition.

Counselling does not claim to be able to treat or cure dementia, but it can effectively manage it. Dementia counselling can help those with the condition and families together...

• find ways to make life as normal as possible
• understand the nature of the condition
• come to terms with changing roles within the family
• learn to get to grips with everybody's emotions
• address deeper questions, such as identity loss and social stigma
• come to accept a new identity
• find a pathway through the health system.

 

 

Making life as normal as possible             

When a family member gets diagnosed, life does change. Whatever your role in the family - whether spouse, child, or even if you are the person diagnosed with dementia, then you'll probably be keen to make life as normal as possible for everyone affected. Counsellors work with families to make life as normal as possible by talking about the following:

• Taking care of hygiene - Ensuring the person with this condition doesn't forget to do important things like clean their teeth, wash and go to the toilet.
• Looking after the house - There are lots of things to remember that most of us don't even think twice about e.g. taking out the bins, putting the dishes away in the right places, dusting and so on. If these things are not done for a long time, the house can become a messy and dangerous place.
• Eating properly - Are they remembering to have breakfast? Are they eating the right things?

                                               

A counsellor will help families affected by dementia work out ways of dealing with these everyday challenges. This might involve assigning care duties to different members of the family on different days, inventing a 'prompt system' to remind the patient to do certain things, and developing a structured, simple routine to make life feel as normal as possible.

 

Communication

Dementia is a scary, inconsistent condition. It can hurt a lot to see someone you know and love deteriorate in such a way. Although their body is there and they look the same, you may feel like the person inside is gone.

Part of dealing with the condition is learning to accept the new identity of your loved one and to get to grips with their new behaviour. One of the biggest challenges will be to communicate effectively with them. People with dementia may have trouble finding the right words to use and sometimes use substitutes that make no sense. Your counsellor will work with you to develop better ways of communicating, which may include:

• Using your posture, facial expressions and body language to convey meaning. Often those with dementia can pick up on emotional cues and get agitated if they sense negativity.
• Speaking clearly and slowly.
• Waiting a moment and repeat if there is no response.
• Using miming gestures to act out what you mean.

 

You can also learn to interpret how your loved one is feeling and what they need by paying closer attention to their behaviours.

Mental health

Dementia doesn't just affect the person experiencing it. It can also impact the mental health of their friends and family. The responsibility of being a carer, the grief of losing a loved one and the fear and anxiety of a future infinitely different to the one you imagined, can lead to a number of mental health problems including:

• anxiety
• depression
• stress
• low self-esteem
• suicidal thoughts

 

With the right counsellor, you could vastly improve the quality of your own life and in turn, the quality of care received by the person with dementia.  For those with very early signs of dementia, counselling can help you deal with any fear and anxiety. It can also help those living with the condition put measures in place to ensure they get the right care and support in the future.

What should I be looking for in a counsellor or psychotherapist?

There are currently no laws in place stipulating what training and qualifications a counsellor must have in order to treat dementia. However, there are  set of guidelines that provide advice about the recommended treatments, including the following:

• Those with mild to moderate dementia should be offered the chance to join other people with dementia in a cognitive stimulation programme.

• Depending on the type and severity of the condition, patients may require medication.

• If the patient is suffering from depression or anxiety as a result of dementia, the psychological treatment cognitive behavioural therapy is recommended.

• Relaxation techniques/treatments including aromatherapy, massage, dance and animal contact are also useful if the patient becomes distressed.