Dementia

Dementia is an umbrella term to describe different brain disorders in which there is deterioration in memory, thinking, behaviour and the ability to perform everyday activities. Although dementia mainly affects older people, it is not a normal part of ageing. Worldwide, around 50 million people have dementia, and there are nearly 10 million new cases every year.  Several diseases, and injuries to the brain such as a stroke, can give rise to dementia. However, the most common cause is Alzheimer’s disease.  Dementia is a terminal condition, although some treatments can slow the progression of the disease.

Symptoms of dementia include memory loss, confusion and problems with speech and understanding. Other common symptoms include difficulties in managing emotions, managing new situations, difficulties with language, and decreased motivation. Often Dementia is described as moving through several stages over time, but no person’s journey will be the same as another’s.

When designing our Memory Lane Community, we needed to understand how dementia may affect a person’s perception of their environment, and how everyone’s experience of living with their dementia will be different.

As Tom Kitwood said “Once you’ve met one person with dementia, you’ve met one person with dementia”

These are just some of the ways that dementia can impact on a person’s life:

How dementia can affect us in our Activities of Daily Living:

Dementia most commonly impairs our memories so we can forget:

• People’s names, what they look like even those close to us,
• How to orientate ourselves, even to familiar places, so we may get lost even looking for the toilet
• Where we put things, what we have been doing even recently, even where we are
• That we have done something, even in the recent past and so may repeat doing or saying things

It is our eyes that see images of the world around us, but it’s our brain that makes sense of what we see. Dementia can cause the following problems with our eyesight and hearing:

• Reduced eye movement and control and reduced peripheral visions –causing problems with reading, concentration and the ability to cross roads safely or see danger.
• Recognising familiar objects: colours, faces and objects can become difficult to perceive.
• The ability to see well in low-light – we may need additional illumination to see clearly.
• Double vision: possibly leading to disorientation and frustration.
• Visual hallucinations: can be more common in advanced dementia, as the brain can misinterpret what the eyes see, or we can see things others can’t.

It is our ears that hear the noises around us, but again, our brain interprets these noises to make sense of what we hear:

• Hearing Loss – so that conversations, or words may be lost
• The ability to differentiate between different sounds, and to filter out background noise – can cause confusion and the feeling of being overwhelmed with noise
• Auditory hallucinations; the brain can misinterpret sounds, or we may hear things others don’t hear.

Dementia can impair our reasoning and ability to process information so we can find:

• Abstract notions like money and value confusing.
• The consequences of actions may elude us.
• Ordinary questions can take some time to process and for us to formulate and speak the answer

Dementia can impair our ability to learn so we can:

• Find new places disorienting.
• Have difficulty getting used to unfamiliar objects or routines.

If we combine just the effects above, it means that people living with Dementia may:

• Find large groups difficult.
• Become anxious in situations we coped well in before.

When our senses are impaired through living with dementia we can become very sensitive to others’ feelings and emotions which can be overwhelming so we may:

• Benefit from calmness.
• Need good lighting to give us as much information as possible about our surroundings.

When we are overwhelmed, we can become highly emotional, frustrated or have feelings of anger or helplessness.  These feelings can then manifest in ways that some may call ‘Challenging Behaviours’.  At Park View we believe that all behaviour is a form of communication, and if we watch and listen carefully, we can learn what is overwhelming for each person and help support them to manage those difficult situations, and in turn reduce the frequency of stressful moments for the person.

Everyone has a relationship with their environment and the people within it. Each day we move about in our own worlds, relating to people, objects and places of meaning. Much of how we think about ourselves is reflected in our environment and in our nearest and dearest. Environments of our daily lives give us a sense of identity and resources for presenting ourselves to the world around us.

It is no different for people living with dementia. Even if our perception of time and space has changed, we all live in a world where relationships, objects and situations matter. People with dementia may not be able to speak about the meaning their environment has, but a sense of meaning and importance remains in their lives.  People living with dementia may have a sense of loss from realising that they may not remember things as they could, or cannot process information as they used to, causing anxiety and insecurity.  At these times an environment of comfort, security and empowerment is essential, we need to feel a part of our environment in order to function well within it.  A home-like environment adds continuity and familiarity to everyday life, encourages continued family involvement and strengthens family and friendship ties. It gives us a sense of belonging.

As a person’s dementia develops, despite some abilities being impacted, there will still be lots that we can enjoy doing, both individually and with others. Maintaining existing skills, as far as possible, can give us pleasure and boost our confidence. For this reason, it is important to help find activities that we enjoy doing, can do with others, and to continually adapt those activities to meet our changing interests and needs, throughout our illness.

When looking at promoting the health, wellbeing, independence, and choices of people with dementia, it is important to look at social inclusion which means ensuring everyone has the same opportunities and is not discriminated against for any reason, but that a community is made of all sorts of people, from all backgrounds, with differing levels of ability and differing interests. Opportunities  may include what we might see as very simple things, such as being able to make a cup of tea for your people in your community, friends or visitors.  For some people with dementia there may be barriers to those opportunities, for example, being unable to communicate wishes and desires clearly, or poor mobility or dexterity, for example, the inability to lift a kettle safely.

In the traditional model of residential care for people with dementia, opportunities are often denied, based on the reasoning of risk assessment—e.g. The risk of scald when making a hot drink.  We believe that people with a dementia should be given opportunities and assistance to be able to live as ‘normal’ a life as possible.  By creating areas within Park View where our residents may exercise choice and control in their everyday lives, quality of life and wellbeing in our residents will increase.

The Coffee Shop at Park View is one such area, where Residents will be able to offer the opportunity to their guests of ‘taking them for a coffee’.  People will be able to make or offer drinks to their guests using a safe to use, easily accessible quality hot drinks machine and also be able to offer cakes and snacks.  Sharing such an activity that people enjoy may bring them closer together and help them find new ways to relate to each other.

Some people whose dementia has advanced may be unable to make sense of their surroundings and going out into the community may be intimidating .  In these situations, families and friends can take their loved one ‘out’ to the Coffee Shop.

Each person affected by dementia is unique. The individual’s existing lifestyle is the best guide to what will remain fulfilling, even if some abilities deteriorate over time. Because the individual is more important than the disease, plans for care and lifestyle decisions need to start with his or her preferences, relationships, skills, routines and cultural background.

A person living with dementia is still the person they always were, and still needs to have a sense of purpose. We all like to feel busy, useful, occupied and fruitful. To meet these needs, staff in our Memory Lane Community will use residents’ life stories to provide each person with occupations which will be relevant to them and give their days special significance. We encourage meaningful occupation that is positive and pleasurable for each individual, providing reassurance, wellbeing and security.

At Park View we want to support continuation of roles and lifestyles.  People with dementia have different interests and pastimes, as do you and I. Designing daily life around interests and pastimes gives people pleasure; makes use of their skills and abilities; makes important links with people and places that were/are important in their lives.   This adds variety and interest, is stimulating, reducing boredom, anxiety, stress and frustration. The focus is on being alive rather than on being a person with dementia.  Often moving to a care home will mean giving up all  or many of those daily activities that have been a part of a person’s life all of their life;  The need for attachment is strong in each of us, more than ever when we feel like a stranger in someone else’s environment.   People with dementia need to feel a sense of belonging and being able to continue with a usual daily routine is a large part of this.   Daily activities should mean something to the person, not just created to fill in time.  Meaningful occupation means being involved in everyday life.   Activities such as doing the washing up, making a cup of tea, hanging out the washing,  cooking, sweeping the yard,  being able to entertain guests, or maybe even just sitting around the kitchen table will create a familiar environment and give a sense of comfort and empowerment to the person with dementia.  This promotes an increased sense of self worth and confidence.  In the kitchen diners, our residents are able to continue enjoying those activities familiar to them in a safe environment.

We can recreate a sense of busyness and worthwhile occupation which can be achieved through organisational tasks, such as sorting out collections of jewellery, postcards or buttons into sizes or colours and then packing them into jars or boxes. These organisational tasks help to restore a sense of order, satisfaction and self worth.  Typing or writing letters may encourage people to express themselves even though their verbal communication skills may be impaired.

We are fortunate to have lovely Gloucester Park on our doorstep and we take a ‘Walk in the Park’ several times a week to keep us moving well, which reduces a risk of falls, gives us a breath of much enjoyed fresh air, offers many sensory stimulations through sound, sights and smells, and even the touch of a fallen pine cone, these walks stimulate appetite and conversation and keep us feeling part of the world outside.  We have recently installed a shed in the garden so our residents can enjoy gardening safely and watch the results of their efforts bloom and grow.

People with dementia often have difficulty remembering what’s recently happened in their lives. This can leave them feeling confused, vulnerable and less confident. However, their memories from years ago often remain detailed and intact. Recalling these memories can be immensely therapeutic, not to mention enjoyable.

Reminiscence is a vital way to stimulate communication and promote confidence and self-worth in people with dementia. The use of reminiscence therapy with people with dementia has been linked with improvements in well-being, social interaction, self-care and motivation .

When we reminisce we don’t simply recall random events in a cold factual way; we are able to relive the experiences that are personal to us in a way that is vivid and engaging, evoking emotions and taking us back to that moment in time.  Some people may no longer have the ability to explain or express their thoughts through words; reminiscing is much more then simply talking about a memory. Reminiscing can involve all the senses