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In my previous June blog, I talked about the myth of aggression in dementia in the late stages of the disease. In that blog, I discussed the need for agency (control of your world) and empathic communication which enables a person to live well.

In part 2 I will briefly discuss 2 other elements that can cause an individual with memory loss to become anxious and possibly angry; hyper-arousal and the environment. These two elements are less common and simpler to manage but worth being aware of.

Hyper-Arousal causing aggression in dementia

Someone living with dementia needs to live in balance with the world around them, neither over-stimulated nor under-stimulated, and in a similar way to some neuro-divergent people, can easily become overwhelmed.

Hypo-arousal means the absence or lack of stimulation, feeling under-whelmed. For most people, this can affect their eating, sleeping, and positivity, but for those diagnosed with dementia, it can result in more rapid confusion or cognitive deterioration. This is why The Ness dementia daycare centre offers cognitive stimulation and works to educate people about the risks of under-stimulation.

Hyper-arousal means excessive overstimulation or excessive sensory input. For those with normal cognitive function, this is rarely a problem, our brains have something called ‘The Cocktail Effect’ in which we can filter out noise and sensory information to concentrate on one thing or person at a time. This stops our brains from becoming overwhelmed and unable to make decisions, understand communication and function in a normal way.

An individual living with dementia finds it harder to filter out noise, talking, colour, touch, and people and this overstimulation can become stressful. The result is heightened anxiety, increased confusion, and emotional dysregulation. In some instances, this can lead to behaviour that is aggressive, which can be understandable in the hyper-aroused context.

Once you are aware of the importance of a balanced stimulus then you can reduce the risk of emotional dysregulation. For example, you can make sure that you aren’t talking at the same time as playing music or having the TV playing. Avoiding highly stimulating situations like busy shopping areas, busy parties, or loud pubs/cafes/restaurants will also help reduce the risk of a loved one with dementia getting aggressive. Talking face to face and mostly in a 1:1 scenario or in a small group without other distractions will also make a difference. Equally, you will need to find a balance and ensure an individual has some form of social stimulation and avoids hypo-arousal which can be equally damaging.

Environment causing aggression in dementia

The final element to managing emotion is the environment. This is linked to hyper-arousal and to validation therapy. We all have a subconscious emotional reaction to the environment around us, sometimes walking into a space and feeling calm or feeling engaged and active etc. Our own homes or our childhood homes particularly fill us with calm.

In someone living with dementia, this emotional reaction to an environment is heightened. This is also linked to states of arousal, too much colour, objects, music or noise and the environment feels stressful and confusing and can create upset.

Understanding where you are and what you are doing helps to orientate and create calm. Those in the moderate to advanced stages of the disease may link an environment back to a good or bad time in their life. For example, they may have been a teacher and they come into an environment and believe they are back at school, in their job, working. If this is positive and creates a positive emotion or calmness, then we validate that presumption and agree that it is their school/place of work.

Equally a dark room or house that has too much or too little stimulation can create a sense of danger, and a fight or flight response. If the person links the environment to an unhappy or stressful time in their life then this creates a negative, anxious and even aggressive emotion.

Clear, simple, bright colours with lots of light (especially natural light) and not too much furniture/objects can help to improve mood or maintain stability. It is worth being aware of an environment and working to make it feel as calm/happy as possible.

Conclusion

That brings us to the end of our blog on aggression but to briefly summarise; aggression in dementia is a myth and most people never (or rarely) experience aggression.

If there are angry outbursts or aggressive physical reactions they are often the correct emotions/reactions within the context that person is living. With careful management of communication, offering a sense of agency, reducing hyper-stimulation and managing the environment you can mostly enable someone to remain in a stable emotion. That is not always the case and there is no magic formula but a simple understanding of dementia and an empathic understanding of what that person is going through can help a huge amount.

If you are looking for support in stimulating your loved one with dementia, or are in need of a safe place for your loved one to be social get in touch with our friendly team. We will get to know more about you and your loved one in our complementary consultation and will be able to advise how our services may be able to help you.

Call our team on 01626 774 799 or email us at [email protected].

Many of us are aware of the shocking statistics around dementia; 1 in 3 of us will know someone living with this illness. In the UK today there are more than 900,000 people diagnosed with dementia and it remains one of the highest killers in the UK with 12.5% of all deaths attributed to dementia in 2019. Over 20% of those in their 80’s will have some form of cognitive impairment.

The latest census in 2021 for Exmouth suggested there are over 45,000 people over 65 and that represents over 30% of the total population (East Devon Gov UK). In comparison, individuals over 65 years make up only 18% of the whole UK population! There is a looming elderly care crisis in Exmouth & East Devon and this is why it is such exciting news that a new specialist dementia daycare centre is launching in Exmouth this July.

The East Devon commissioners have been working with The Ness Care Group to convert the old Withycombe maternity centre on Withycombe village road into a state-of-the-art memory service. This will be a first for Devon and offers families a host of support.

Just some of the services that will be offered at the dementia daycare centre will include:

• Reminiscence therapy and cognitive therapy running every day to help stimulate and maintain your memory.
• A men’s shed – a specialist space to tinker, share a cup of tea and build things.
• A garden to grow vegetables, drink tea and enjoy the sunshine.
• A café for families to meet and get peer support. To talk to professionals and share their burdens.
• Training space – A place for health professionals and professional carers to learn about dementia and become experts.
• Access to specialist nurses and OTs to help families navigate the health & social care system.
• Specialist Cognitive measurement – Daily measurements are taken so that families know exactly when there are changes and the best way to manage those changes. A unique opportunity to manage the diagnosis.
• Time out (respite) for carers – The Hub looks after the individual all day allowing the family time off to rest or catch up on jobs.

Up until now families have often either struggled to get a diagnosis or once a diagnosis has been given they are left to fend for themselves with very little information on how to stimulate, care and support someone living with this long-term illness. It can feel very lonely and isolating and does result in carer burnout over time. While the person living with dementia isn’t getting the expert care they need to maintain their mental and physical health.

This July that is all changing and Exmouth families will be offered better care, better support and more information about dementia and the dementia support services available in Exmouth.

To find out more about the launch and everything happening visit our website or email [email protected].

If you are interested in our dementia daycare centre in Exmouth, join our waiting list by giving us a call on 01626 774 799.

The Ness team are often asked by families how they should deal with aggression in dementia. A common public misconception is that those living with dementia will at some point in the future become aggressive. This is an unhelpful, inaccurate myth. In fact, the research suggests that less than 20% of those living with dementia will develop a behaviour that requires professional intervention and management through specialist medication or individuals. Most individuals can live well with dementia expressing only mild behaviours that challenge the carer if supported and enabled with empathy and understanding.

When an individual does become frustrated, angry, upset, or aggressive it is normally a reasonable emotion within their immediate context. In this blog, I am going to look at two reasons why an individual might become upset and display reasonable anger, and then offer some tips on the best way to manage these episodes. It is a complex topic and so I will work on this topic over two blogs and tackle hyper-arousal and environment in the second part.

Agency or control of the world we live in

I have mentioned this in previous blogs, however, 2 things can often occur after someone is given a diagnosis of dementia. The first is that well-meaning carers or families will often begin to do everything for the person living with dementia. The person with dementia will no longer cook, clean, lay the table, or decide where to go or what to do. The primary carer unconsciously has disempowered their loved one, taking away their self-esteem and sense of control.

Secondly, the person living with dementia begins to feel out of control, they can’t recall what they were doing, why they are in the room, what was being said etc. This sense of being out of control can feel terrifying, it is worth pausing for a moment and imagining not being able to recall what happened 20/30 seconds ago or 5/10 minutes ago. It is a scary feeling and the natural reaction when your sense of control is taken from you or you feel out of control is to become defensive and to impose control on the small minor things you can control; for example not washing in the morning, refusing to get out of bed, insisting on leaving the house or not eating/drinking.

In the context of the person living with dementia, this makes sense and allows them to feel like an adult who can make their own decisions. If someone stops us or forces us to do something we have every right to become angry, to shout or worse. Once you, as their loved one/informal carer, understand the importance of offering an illusion (or real) sense of agency then you withdraw potentially aggressive conflicts.

So the first tip to deal with aggression in dementia is to offer the individual a sense of control and avoid battling over personal decisions made by the individual with dementia. Instead agree on praise and if needed distraction. For example, if the individual with dementia states “I’m going for a walk,” the informal carer might say “But you only came back 10 minutes ago and it is raining?” The loved one with dementia might respond “I don’t care I am going for a walk”. The informal carer can then say “Great idea, sounds lovely, can I come with you as I always enjoy your walks.” 2 minutes later the informal carer might say “I can’t find my shoes, damn, I need help. Please can you help me find my shoes? You check upstairs and I’ll check in the cupboard. Meet you in 5 in the kitchen.”… And so on. The carer has recognised the need to agree, avoided confrontation and built a sense of self-esteem while trying to distract.

I should caveat that I recognise this isn’t always simple and those with dementia may at times insist on a course of action that is harmful or over time could become harmful (like not washing for weeks). In this situation, the carer can’t go along with that decision and needs to force the issue and my advice in this situation is to bring in another person/organisation. Avoid the immediate conflict and look for an alternative person to come in and insist on a refused course of action. The individual with dementia may be more pliant with a Ness member of staff than a family member. Sadly in dementia, no solution is foolproof.

Communication

Communicating empathically and intelligently can be challenging with a loved one who you have spent 30+ years speaking to; we all have communication patterns that couples or families fall into. This might be banter, teasing, sarcasm, bickering, or logical disagreement. However, relatively early on in the disease progression an individual’s ability for complex communication deteriorates and those old patterns of communication become unsupportive and unhelpful.

The person living with dementia can’t follow a reasonable argument, they may no longer understand teasing and misconstrue the teasing as an insult. An informal carers communication pattern needs to change and this can be a challenge for the husband or wife of 50 years. The informal carer or family need to take a moment to imagine how their loved one is feeling, which is often confused, anxious, or out of control, and in their communication tackle that feeling, not necessarily the question or statement. All of us when feeling confused and out of control will act defensively and sometimes verbally aggressive. That is normal and not aggression in dementia.

Once you recognise this then your communication should (most of the time) have 3 objectives, to offer the individual a sense of:

• Safety or love
• Self-esteem or worth
• Control or self-agency

If communication offers those 3 things then conflict diminishes and aggression in dementia and the self-defence action/language will diminish.

Albert Mehrabian, a researcher of body language, was the first person to break down the components of a face-to-face conversation. He found that communication is 55% nonverbal, 38% vocal, and 7% words only. For someone living with dementia nonverbal communication dramatically increases to as much as 90% of face-to-face communication; this means tone of voice, eye contact, smile, touch, laughter and love are far more important than explanation or persuasion.

All of us respond differently to different forms of communication, therefore take time to explore and take note of the ways that are most likely to improve mood and reduce anxiety and frustration. The person living with dementia can no longer change or learn but we can, although I should warn it can be tiring and require a great deal of patience hence getting outside help is always a good idea.

Let us help you deal with aggression in dementia

As I mentioned at the start, The Ness families discuss aggression often and our teams are experts at managing those with challenging symptoms and we very rarely see any anger or aggression in our hubs. If you would like more advice or to speak to one of our health professionals sign up to our membership portal or give us a call on 01626 774799.

Most people believe there is a binary decision when it becomes time to focus on finding care for a loved one; residential care or domiciliary care. My priority is trying to help families understand the many different ways that someone can be supported as they become frail; too often the public thinks you either have to have domiciliary care coming in or send someone into full-time residential care, but there are in fact many options and many gradations of care, including live-in care.

However, I am focusing, in this blog, on Live-In-Care for individuals living with dementia. This is when a professional carer moves into someone’s home to care for them and maintain their safety allowing that individual to remain at home until their final day. Due to the lack of knowledge and the stress people feel when forcing a relative into residential care against their wishes, I often find myself advising families about live-in care as an option when they are looking for 24-hour care.

What is live-in care?

A live-in carer can be a good alternative. Moving towards, what we call, complex care is delicate and there is a right time and a wrong time to think about needing 24-hour help (before that time there are many less intrusive ways to ensure safety and good support).

The financial cost implications between 24-hour live-in care and the alternative of going to live in a high-quality residential care home are similar. Both are expensive but roughly the same price.

To have a live-in carer you do need a spare room and ideally ensuite facilities and you should invest in a bathroom with some moving and handling equipment (i.e. a bath chair to get in and out of the bath). Unlike in a residential care home, the live-in carer is alone and therefore needs the correct lifting equipment available to move someone without placing their own physical health at risk. It, therefore, goes without saying that live-in carers are only possible if the person doesn’t need 2 people to move them.

Ways to find a live-in carer

Although almost all domiciliary care agencies offer live-in care it is best either:

• To look for a company that only offers live-in-carers. There are some national companies that specialise in this and that means their staff are trained to live & work in people’s homes. They are more easily able to quickly find a carer or replace them, and they have huge experience in this more niche area.
• Or alternatively, you can be fortunate and know or find a self-employed carer. There are an increasing number of professional carers who work for themselves, often specialising in live-in care and can build long and trusting relationships with families. The downside is that if they don’t have a friend/colleague who can cover for them. You or your family will need to cover their holiday & rest time. On the plus side, you get to vet them, to know them and if they are good they can be with you for years on and off. I have found this process is often done by referral or a friend of a friend refers someone.
• That said you can approach your local Domiciliary Care Agency, but be mindful this isn’t their specialism so you want to be clear in what you want and quick to pull them up if they aren’t delivering. They’ll also probably recruit for this particular job and so may take time to organise.

Drawbacks to live-in care

There are some negatives to having a live-in carer just as there are negatives to going into a care home. No care solution is perfect and each family has to decide what works best for them. Probably the biggest negative to live-in care is adapting to having someone living in your space the whole time, and if you don’t like them, or there is a character clash then this solution quickly collapses (in care homes there are enough staff for this to not be an issue).

The way around this is to be very clear and honest to both the individual and the company about what works for you. The carer will not know the routines and the norms for that household and will need clear instructions. The very best carers are those that are very aware that this is your space/home, they need to adapt to your routines and ideally be as visible or invisible as suits that person (with a larger house this is easier as you don’t have to share the same rooms). They should offer the individual space but be available when needed. A fine balance that not all carers understand.

Live-in carers normally do a certain number of weeks on and then time off. If they are sole workers that can be negotiated (sometimes 6 weeks on and 2 weeks off), if they work for a care agency, I have heard that is often 2-week stints before a new person rotates in for 2 weeks. Each person and company manage this differently, so this is something to discuss when you are first talking to a company or carer. However, everyone needs time out and also time off each day, so families may have to organise a 2-hour period in the 24-hour day when the carer can do their own thing (again this depends on the individual and family), some come to us to give their live-in carer that respite.

How we can help

At The Ness, we offer a variety of services that might be suitable for your loved one and their carer to use as respite. Whether you are looking for 2 hours each day, or a whole day every week, we can accommodate you.

Learn more about our services, and get a complimentary consultation by getting in touch with our expert team.

Call us on 01626 774799 or email us on [email protected].

Take a look at our Facebook page to see what we get up to with our members.

The concept of denial is very common within dementia. At The Ness, we see hundreds of families and we will rarely assess someone who has insight into their diagnosis and accepts the diagnosis of dementia. In this blog, we are going to explore why this occurs and what actions families should take to support the person living with memory loss.

Why does denial in dementia occur?

There are two primary reasons why individuals don’t accept their diagnosis.

The first is that amongst the older generation, there remains a great deal of stigma around the diagnosis. When those who are now in their 70s and 80s were young, individuals diagnosed with dementia were still being locked up in government-run Elderly Mental Institutions (EMIs); they were labelled mad and given very little treatment. Even today there are many misconceptions around the disease with those in the community misunderstanding some of the symptoms (people think everyone with dementia will become angry or aggressive). This social stigma is hard to shake off and therefore people prefer not to have the label ‘dementia’ attached to them.

The second reason is that the illness itself works against a person’s ability to accept their diagnosis. For a start, the individual will not be able to remember the visit to the memory clinic or the doctor informing them of their dementia. If I can’t remember the tests, the scan or the formal diagnosis then how do I know I have the illness? Maybe I am fine and it is everyone else who has it wrong? We construct our own sense of self, we are our own memories, our perception and our brain. Therefore if someone tells me that I have dementia I don’t believe them, I am far more willing to believe my own memories and my own perception.

How do family & informal carers help someone who is in denial?

I talk in another blog about communication and families’ unnecessary need to correct someone when they get events mixed up or the sequence of events incorrect. We all feel the desire to correct or inform someone we love if they are making a mistake or misremembering. However, you should try to avoid this for those living with dementia.

Whether a fact is correct or not is no longer important. How that person is feeling and whether they are finding joy in the conversation/communication is the sole goal. As I explained above, part of denial is an inability to grasp the diagnosis and so constantly reminding someone or insisting they remember they have dementia is not going to help. It will cause upset and may end in anger.

Almost everyone at some point in their life will say, ‘Oh my memory is awful’ or something along those lines, and so those with dementia are far happier and more likely to admit to having a bad memory. At The Ness, we often hear, ‘…sorry my memory isn’t great,’ and we will often respond by saying ‘…oh, I know my memory is awful at times,’ making them feel less judged and it more acceptable to have no memory.

At The Ness, we never mention the D word unless the person living with dementia mentions it first, but if they do bring it up I often jump on the opportunity to understand more. If someone admits to having dementia, I will often respond by asking how that makes them feel. We all find it easier to describe feelings and it is often a weight off their shoulders to admit they are scared, frustrated, upset or angry by the diagnosis.

So no need to remind someone they have dementia. You can just refer to a bad memory.

When Denial can cause problems and what to do?

At The Ness, we recognise that at times denying you have an illness can create challenges for families (and for us). This includes refusing to take medication, refusing to accept carers into the house, refusing to attend a specialist space like our dementia care centre, and taking actions that negatively impact an individual’s mental health like isolating. Unlike with heart disease in which you may say “You have heart disease you should see a physio and nutritionist twice a week to reduce your risk,” you can’t say “you have dementia you need to attend The Ness twice a week to maintain your brain and delay the deterioration of dementia.” They don’t believe you and can’t understand the recommended dementia treatment.

When denial becomes a challenge, family and informal carers need to use an individual’s biography and habits to encourage behaviours that will help. This may mean referring to activities or actions in a language that resonates with an individual. Instead of attending a daycare service, you are going to a ladies’ lunch club or a church group or a new café. Rather than a carer coming to ensure you have eaten and taken your medication, there is a local friend of the family visiting as she is bored and would welcome the company. Rather than asking your husband to take a bath, you ask if they can help you in the bathroom as you feel unsteady. Each time gently changing the language to help the individual living with dementia to feel in control and keen to try/accept the action/activity.

These semi-truths may feel uncomfortable to some and/or not appropriate to others and they do not always work. However, the important thing is to recognise that someone’s ability to understand the logic, a clear explanation or to remember diagnosis/facts is no longer possible, and what is true or not true is equally no longer important. What is crucial is to enable the individual to live a healthy & happy life.

What we do at The Ness

At The Ness, we accept the individual as they are in that moment and in a way that offers them dignity and agency. We do not mention the D word and recognise that most people who visit our dementia support services don’t want to, or don’t believe, they have dementia. We do know that maintaining social connections, reducing isolation and stimulating our brains will delay dementia and The Ness will work with families in a way that works for them to help each person.

Denial is a normal reaction to an incredibly challenging illness. We should accept denial and take joy in what we have.

If you are looking for dementia care near you, then get in touch with our team for a complimentary consultation and to learn more about our service and how we can help. Call our team on 01626 774 799, or email [email protected].

How The Ness helps those who care?

I am amazed daily at the strength, compassion and care families have in supporting someone who is living with memory loss.  At The Ness we know that we have 2 equally important jobs; 

1) To help the individual who informally cares for someone living with dementia and 

2) Secondly to stimulate and help the individual who is living with dementia.

I often hear individuals saying ‘they can manage fine’ and ‘we don’t need any help or support’ but the most important piece of advice I can possibly give is to encourage anyone who helps someone living with dementia to seek a network of support for themselves as well as the person living with dementia.  There are 3 crucial reasons for this.

Staying happy and resilient

Dementia is a chronic illness that (very sadly) has no cure and will deteriorate.  The journey can be up to 10 years or longer from noticing memory damage.  The person who becomes the primary informal carer will often live with the person 24 hours a day, 7 days a week for years or decades.  During this time they often become more isolated, their life is subsumed by the person they are caring for, they get less sleep, look after themselves less, and lose perspective.  All of us, whether we care for someone living with an illness or not, need time for ourselves.  If we don’t plan time for self-care and enforce time out for our needs then we become less happy, less resilient, less caring, less patient, and less capable.  

At The Ness Hubs, a core part of our dementia support service is building time out for the informal carer giving them the space to rest, to work, and to do something that brings them joy.  If you want to stay resilient make sure you don’t stop taking time for yourself!

Keeping those living with dementia social

Secondly, the person living with dementia also needs to be among lots of other people.  They may not know this or express this desire but unless informal carers separate themselves from the person living with dementia and encourage the individual to spend time away from them, trusting alternative people, then shadowing can start to occur as the illness progresses.  

This is a common symptom of dementia that occurs in the moderate stage, in which the person living with dementia feels completely lost and confused when their primary informal carer is not in sight.  They no longer recognise many people or feel safe in the world but the one person they still (often) recognise and feel safe with is their primary carer.  This means they cannot let them out of their sight for more than a few minutes (even to the point of following them into the toilet) without feeling overwhelming panic.  This places immense pressure on the informal carer, they become isolated and locked into the individual living with dementia’s demands, and very quickly their resilience breaks and carers breakdown occurs with social care and older people’s mental health teams getting involved. 

The solution to this symptom of the illness is to build alternative people into the network of support.  Help the individual to build a trusting therapeutic relationship with others, to get them comfortable in going out, in meeting people without you, to maintain boundaries in the relationship.  This is something our dementia support services will achieve, as they become a trusted group of people for the person living with dementia.

The Ness outreach team works hard in this area, building continuity in their therapeutic relationships and trust.  The Ness can then slowly become the trusted support allowing the informal carer to maintain their own identity and their resilience.

Dementia support services outside the family to lean on

Finally, dementia is incredibly complicated, not only the disease itself, the symptoms associated, and the progression through the stages but also navigating the health & social care systems.  Families and informal carers need to have access to someone or a dementia support service or organisation that can guide them through the journey.  Information at the right time in the right way can empower the person caring for someone with memory loss!  Allowing them to be stronger, more resilient, and better able to go on caring for someone over years.  

At The Ness our dementia support services include a carers empowerment group that helps families connect with other people going through a similar situation. This offers expert advice on dementia, social care & funding.   The Ness have a specific carer support expert that is available on the phone or face to face but we go further; you also have access to Occupational Therapists (OTs) and specialist dementia nurses that can guide carers and families through the health & social care systems and ways to fund the costs.  Alongside the specialists, every single Ness member of staff is trained to offer emotional support and to understand what an informal carer is going through.  

In summary, this chronic illness is incredibly hard and goes on for many years. The way to be the best informal carer and to offer the very best loving care you can is to ensure you get expert advice, time for yourself, and introduce other people into your life who will be trusted by the person living with dementia.  At The Ness dementia support services, this is what we do!  We are with you for the journey.