The 3 Stages of Dementia

An Overview on How to actively treat and support someone at each stage

Introduction

Dementia is an illness that mostly affects those in the later years of life.  The term dementia is an umbrella term that represents many different types of neurological deterioration, the most common and well-known being Alzheimer’s.

Roughly 17% of people between 74-84 years will be diagnosed with a type of dementia and this figure rises to almost 40% of adults in their 90’s.  I have previously written about the importance of an early diagnosis to enable better treatment and delay (or with mild cognitive impairment MCI even stop) further deterioration.  If there are signs of cognitive/memory problems seek GP and memory service support.

In today’s blog I am offering an overview for good treatment once a diagnosis of dementia has been given.  The Ness Group are experts in dementia and work with families from pre-diagnosis right into the final complex stages of the illness and understand that there is a good treatment pathway and a bad treatment pathway.  Too often we stick our heads in the sand!

The Ness have seen many times over the years outstanding care and (sadly) a total lack of care.  If someone seeks expert support and has good social networks then we have seen individuals go on to live independent, happy, fulfilling lives for years and years.  However, if an individual lacks social support, spends long periods asleep, in front of the telly or under-stimulated then their cognitive decline can be swift and the need for more complex expensive care occurs far faster.

Dementia Pathway

Dementia is a journey that typically lasts around 10-15 years but it has many stages and the important thing for families and professionals to understand is that at each stage a different treatment approach is required.

Too often families are given a diagnosis and then a shrug of the shoulders by well-meaning GPs and sent out into the community.   Most health professionals fail to view dementia through the similar lens as other long term chronic illnesses.  The consequence of this is that those living with dementia don’t get the same NHS treatment, follow up and regular reviews that you may receive with Parkinson’s, cancer or heart disease.  We believe this needs to change.

Although I know that many NHS professionals talk about the 7 stages of dementia for simplicity in this blog I am going to very simply split the pathway into 3 distinct stages – mild, moderate and advanced.

The Mild Stage (1-3) – Early Dementia

This is a really valuable time that is often squandered by families scared of admitting memory problems or health professionals unaware of the best treatment.  In the early stages of Mild Cognitive Impairment (MCI) or early-stage dementia both cognitive (brain) exercises and certain Alzheimer’s drugs have the biggest impact.  At this stage individuals and families should seek a GP appointment and start actively working to help maintain memory, reason and language.

Some GPs are unaware of MCI and unwilling to refer individual’s on to a memory clinic or diagnosis.  This doesn’t matter.  If you or family are aware of changes to your brain then you can start exercises, start researching, start gathering information.

Exercises fall into 2 categories, see this in a similar light to a back injury or broken hip that needs active gym sessions;

1.  Active brain work ideally with a specialist company like The Ness Care Group, or through community learning, memory games, digital games, language games, learning, talking, exposing yourself to new situations.  This should be a conscious thing that requires some planning and effort (not always easy).  A target is sometimes helpful, for example 4 hours of active brain stimulation per week – 2 hrs with The Ness and 2 Hrs at home.
2.  Secondly – increase or maintain good social contacts.  This is social time with friends, family, but also with strangers, and groups.  This is a time to lean into socialising despite probably feeling like hiding.  I believe we should be up front and clear if our memory is not as sharp, so people help enable conversation or reduce noise in the environment.

Early active brain exercise has been shown to slow the rate of deterioration.

Alongside the brain stimulation it is essential to focus on 3 physical things;

1.  Hearing – make sure that the individual with memory loss has good hearing aids and gets their hearing assessed.  The latest research links increased deterioration with poor hearing.
2.  Sleep – ensure everyone is getting a good night’s sleep and if this is an issue seek GP support.
3.  Cardiovascular care – research links high blood pressure and poor cardiac output with vascular dementia so ensure your loved one is on the right medication, exercises regularly and eats food that supports their heart.

Also important to note is that at this stage individuals have insight into their drop in memory/planning/comprehension this valuable insight does disperse or disappear altogether so you should take advantage and seek information, talk to family and ask for professional help.

Legal & Financial aspects – This is also the time (if not already done) for family to seek Power of Attorney and Power of Health.  Hopefully the individual with mild memory problems will recognise the benefit and have capacity to engage in the process.

The Middle Stage (mild to moderate 4 – 5)

This can be a challenging time for those supporting or caring for someone living with dementia.  The disease will have caused damage across the brain affecting, language, logic/reason, empathy, memory.  The disease has damaged an individual’s ability to make sense of the world and this can be very scary, causing some behaviours that can be a challenge.

By now the individual should have a diagnosis.  If they do not have a clear diagnosis this can be hard to get due to the individual’s resistance but I believe it is still very important.  A diagnosis offers access to treatments, to social care support, to greater help in the community and helps the person caring for the individual to empathise and justify some of the stranger behaviours.

This is a time to fully lean into the support in your local community.  Good specialist Ness support can maintain an individual’s mental and physical health and delay the need for more expensive long term care.

Actions to take for the person living with Dementia (PLWD):

There are 2 crucial aspects to this stage:

1.  Cognitive or brain exercises are now essential, and the recommendation is that someone living with dementia should access Cognitive Stimulation Therapy (CST) a minimum twice a week.
2.  This stage will see a PLWD beginning to develop a symptom called  ‘Shadowing’.  This is a heightened distrust of everyone other than their primary person.  If not countered this can lead to the PLWD not leaving the side of their primary informal carer, they won’t accept new people or new situations and will become very anxious when their loved one is out of sight.  This is subtle but if not countered will lead to carer burnout.  To counter this families, need to encourage greater social mixing & seek help and support by professionals who can share the load and build trust while still possible.

In this mild to moderate stage specialist organisations that understand the disease and aim to try and tackle some of the changes (like The Ness) are vital.  Community charities & voluntary organisations become less helpful for the person living with dementia but can be a source of support for the carers.

The same physical needs mentioned above remain important; hearing, heart & sleep.  Alongside this it should be noted that physical problems will heighten confusion & disorientation, for example, constipation, urinary tract infections, colds, any type of sepsis but once the physical complaint has been solved the individual should with external help return to their normal function.

Actions to take for the informal carer:

This period in the dementia journey can last for years and it is important for the individual supporting that they focus and prioritise their needs (so often ignored).

This can require;

• Actively seeking regular time away from the PLWD
• Trusting others to help the PLWD while you seek activities to refresh and bring joy to yourself.
• Building in some nights away at spaced regular intervals to allow time to completely switch off.  This may need social care support.
• Seeking peer support from other families going through similar situations.
• Seeking professional advice and time to talk through some of the complex challenges arising.

The Moderate to Advanced stage (5 -7)

Seemingly counter intuitively it is in this stage that the focus shifts away from the individual living with dementia and focuses primarily on those supporting him/her.

The final stage can be incredibly emotionally & physically exhausting for those loving and caring for the PLWD.

While the PLWD now has little awareness of the complex world around them, their awareness of those who care for them and their insight into daily life is or has slipped away.  For those working at The Ness Care Group and other specialist spaces the focus has become very simple;

1.  To keep the PLWD as emotionally happy/stable as possible
2.  To offer the family as much respite & help as possible.  

 

Actions for the carer:

The focus must turn to the family or individual who is now helping their loved one 24 hrs a day, 7 days a week.  The Ness looks to understand what the wishes of the informal carer are and seeks to help those occur.  For many they would like to support the PLWD at home to the end and this takes some planning.

At this stage the primary informal carer requires:

• Information – It is so important at this stage.  There are so many options and the need to navigate regulated and statutory care becomes essential which is not easy.
• Respite – As much respite as possible will allow a loved one to continue to care for longer.  This can come in many ways and should be carefully planned.
• Social care & NHS support – Even if financially independent social care are a great resource in this acute period.
• Peer support and talking to those who understand the pressures and the exhaustion.  You are not alone.
• Lean on your network of support – No one can do this (or should do this) alone.
• Financial management – For some expert advice into financial pressures is helpful.  This is an expensive period in the journey and can last for years.

It is a very difficult time and often filled with guilt as exhaustion pushes family to seek residential care or 24hr support but please don’t feel guilty it is natural progression in this difficult journey and everyone who lives with dementia will need expert 24hr care that the family cannot provide.  All we can do is seek the right help and take this transition at the right time.

Conclusion:

In this blog I have broken the journey into very simple and basic actions to take during these 3 periods in the journey.  I am aware that I may have missed many other useful tips, but I hope it helps families to map out the best treatment for their loved one so he/she can continue to live independently for as long as possible.