This year’s Dementia Action Week focuses on ‘getting a diagnosis’.

Dementia Carers Count is supporting the initiative. We believe people who might be living with, or close to someone who might be living with, undiagnosed dementia should:

• be able to understand and recognise potential dementia before a formal diagnosis
• feel confident to seek guidance
• be supported and heard
• have the right to a better package of care from the first appointment, through diagnosis and beyond.

Dementia is the fastest rising health condition in the UK and the greatest long-term health challenge we face and yet there has been a sustained drop in dementia diagnosis rates.

We know the worries for people who have concerns about dementia for themselves or for a friend or family member can begin some time before diagnosis but they often feel unsure where to turn and their concerns are ignored or dismissed.

The current waiting times for a diagnosis will only add to this anxiety. 

It is essential that anyone with concerns that they, or a family member, might be showing signs of dementia are listened to and offered support and medical advice, including those with early cognitive impairment who are all too often returned to primary care without adequate action or guidance, as soon as possible.

What are the signs

Did you know that there are in fact more than 100 types of dementia? 

Dementia affects each person in a different way, depending on multiple factors. 

These factors can include neurology, physical health, personality, our biography and background and the physical and social environment in which we live. 

The signs, symptoms and experiences of dementia can therefore be quite different depending on the individual and consequently, so too can its impact on them and their carer.

What happens after diagnosis?

Caring for a family member or friend with dementia can be incredibly hard. The person with dementia is likely someone you’ve known for much of your life and care for deeply.

Watching someone’s personality, mood or behaviour change can be both distressing and challenging. 

A dementia diagnosis can have physical, psychological and financial implications for you as a carer and for your whole family.  

Carers can feel thrown into the situation and often don’t know how to cope. Feelings of stress, fear and grief can become overwhelming.

What support should I get as a carer?

Dementia Carers Count believes that people with dementia and the people caring for them must receive tailored support and information at the point at which concern is raised that someone is showing signs of dementia and for as long as they need it.

No one should face the challenges of caring for someone with dementia alone. 

Help is available from a range of sources, including other carers, charities like Dementia Carers Count, and through your local health and care services. But we know it is often difficult to access or simply not enough.

Being a family carer is not easy, but it shouldn’t be the struggle it often is for so many.

Our commitment to you

Dementia Carers Count is calling on the Government to prioritise dementia.

We welcome the Government’s investment of £17million to tackle the diagnosis backlog. We call on the Government to support people with concerns about dementia while waiting for diagnosis and get the dementia diagnosis rate back to the national target of two-thirds of people living with dementia, as a matter of urgency.

We strive to make dementia carers count. We want to make your experience as a carer more manageable.

We are in this together.

#DAW2022

While full of joy and happiness for children, play has core roles in their development and learning, and can also be crucial in them engaging in therapy. Imelda Molloy, case manager with ILS Case Management, explores its importance

Through play, children learn about themselves and the world around them. They develop skills, both in a physical sense and socially.  

Imelda Molloy

Play encourages children to challenge themselves, to test themselves and develop an awareness of their own limitations, which often they want to overcome in order to reach a goal. 

Whilst a child learns and develops a skill, they will often repeat it, until that skill is perfected, assisting in the development of confidence and resilience. 

Play, and learning through play, also allows children the opportunity to express themselves. If learning is fun, children are more willing to participate. 

Play involves a certain degree of risk taking and encourages children and young people to set themselves more advanced goals, which is the basis to reaching their potential. They are also more able to retain information as the process of learning has been enjoyable and memorable.

It has therefore long been established that play improves the physical, cognitive, social and emotional wellbeing of children and young people. So much so that the right of the child to play is stated within the United Nations Convention as a fundamental human right. The International Convention of the Right of Persons with Disabilities (2008) also states it is the right of a child and young person with disabilities to be part of recreation and play. 

The value of play should not be underestimated, as right in itself but also as means of achieving optimum development, and in turn, full potential.

How play is key to therapy

As a healthcare professional, play becomes an integral part of developing a rapport with a client from the moment of meeting them.  

It would often be on the basis of playing that communication would develop, and from there would start to build that trust between the child and professional.  

Frequently, through observation of a child’s play, a healthcare professional can effectively begin the assessment process including observing mobility, ability to transition, gross and fine motor skills, spatial awareness, co-ordination, hand function and communication.  

If play can be integrated into treatment and therapy sessions, it can increase a child’s participation, engagement, and motivation, which is likely to improve clinical outcomes and achievement of goals. 

Existing research has shown that children and young people with disabilities experience significantly reduced participation in play and leisure.  

There are a number of issues that create a barrier to children and young people with disabilities being able to access play, which I have experienced as a case manager.  

A child or young person’s impairment can affect their functional abilities and so, in turn can limit their recreation and leisure, for example, reduced strength and balance can affect a child’s ability to play on outdoor equipment.  

For a therapist or healthcare professional, a client’s impairment is often the initial focus of therapy and input, in order to improve a client’s skills or reduce the effect of an impairment, such as spasticity.  

Case managers can liaise closely with all members of the involved multidisciplinary team to co-ordinate and conduct input, which allows input at an impairment level and a more holistic view of a client.  This ensures that a client’s functional abilities are not preventing or limiting them from accessing play.

The importance of finding places to play

Children and young people need to be able to physically access opportunities to play.  

If the environment of the play setting is not accessible to children and young people with disabilities, they will be excluded from this opportunity.  

As a case manager, it can be important to source appropriate companies that can provide specialist equipment in order to ensure that accessibility is not limiting a client’s ability to play.  

Lack of appropriate means of transport for children and young people with disabilities also hinders their opportunities for play within the wider community; it can be difficult for those with disabilities to travel longer distances or public transport may not be suitable to use and so they are unable to access what may be otherwise suitable activities.  

Whilst researching appropriate leisure and play activities for clients, case managers need to consider the logistics and wider implications of accessing such activities.

Some families can face isolation at home, which can affect an individual’s ability to access play.  Depending on a child or young person’s level of disability, they may require a ratio of two carers to one child.  

It can be extremely challenging for families to access play opportunities outside the home if this is the case and there is only one care provider available. 

It may be appropriate in such instances for case managers to support clients and their families in the recruitment of support workers or buddies that can assist clients in accessing play, in the home environment and in the wider community.  

It is important for support workers to understand the value of play and learning through play for their clients in order to reach their maximum potential.  

It is also imperative that those providing care and support to clients with disabilities utilise toys and equipment supporting play that are cognitively appropriate for individual clients, tailoring care to meet their individual needs. 

Making play a part of everyday life

It is crucial that play for all children and young people should be incorporated into all environments, including at home and in educational settings.  

A family home that is lacking space or does not meet their needs may cause a barrier to a child or young person with disabilities being able to access play. It may limit what toys and equipment they may have available to them which could support their recreation and learning or prevent them from developing a skill and subsequently limit their potential.  

It can be that the requirement for more appropriate accommodation needs to be recognised and resolved before case managers can look at sourcing appropriate play and leisure.  

Case managers are able to provide support both in a home and within an educational setting, so can promote play and leisure within all aspects of their clients’ environments. 

It may be appropriate for case managers to advocate balancing play within both environments, for the benefit of their client; a child may have a piece of equipment that will support their play and development that they cannot use at home due to unsuitable housing.  

As a case manager can liaise with home and school, it may be agreed that a client could use the equipment within school as part of their therapy programme as an alternative, providing a problem-solving approach, in order for the child to reach their potential.

Children and young people with disabilities often require support from adults to lead, progress and direct their play. This may cause them to lose the element of spontaneous, self-directed play and the benefits that this brings including stimulating imagination, developing problem solving skills and developing self-confidence. 

It can also be the case as a child or young person gets older and adult intervention may be less suitable. As children and young people strive to reach their potential, a goal is often to increase their independent skills.  

However, it can be challenging to balance this whilst providing appropriate support to ensure access to play and learning through play.  

It is important for carers and support staff to be aware of how to manage this with their clients and actively encourage clients to make their own play choices and lead their play and leisure time, as able.

According to the Cambridge dictionary, potential is ‘someone’s ability to develop, achieve or succeed’.  As a healthcare professional, a core aim of your input is to assist clients in being able to realise and maximise their potential.  

Case managers have the privilege of being able to support their clients, families and wider network to break down the barriers which may limit play, enhance opportunities to develop their play and learning, and promote the facilitation of play, fun and learning through all aspects of a client’s life.

 After all, what better way is there to reach your potential than through the power of play?

The shoulder is the most mobile joint in the body, thanks to it being a ball and socket structure, similar to a golf ball on a tee. Because the shoulder has such a large range of movement, stability within this joint is compromised if limited strength is present. 

The shoulder joint is kept together by a structure of tendons, ligaments and muscles which, over time and with overuse, can become weakened and damaged. The risk of this happening is particularly important for people who use a manual wheelchair as they are at a higher risk of repetitive strain injuries (RSI). In fact, studies have shown that 30-50 per cent of people with paraplegia suffer from shoulder pain that interferes with their activity of daily living (ADL).

Repetitive strain injuries manifest as pain in the muscles and tendons caused by a movement being repeatedly performed either incorrectly or with limited strength. They commonly occur in the wrist, hands, forearms, elbows and shoulders. Symptoms tend to come on gradually and can include pain, tightness, dull aches, numbness and tingling.

Prevention better than cure

The standard form for recovery with an RSI injury is to rest. However, this is not always possible or recommended for wheelchair users as it impacts their independence. Far better to prevent the risk of the RSI developing in the first place.

Given that RSIs often arise due to incorrect movement and/or limited strength, it follows that by correcting the movement pattern and increasing strength can alleviate the problem.

Here at Neurokinex strength training is included in our activity-based rehabilitation programme for all clients to improve their balance, core stability, posture, functional movement and mobility.  

Strength training is often associated with athletic performance but it has many applications for everyday living. We know it improves muscular size and overall strength but our interest as rehabilitation experts lies in the broader lifestyle benefits these improvements bring including building confidence and reducing the risk of muscular injuries. 

A flexible approach

When it comes to safeguarding the shoulder joint against injury, we need to build flexibility as well as strength to allow the joint to work efficiently through its full range of motion.

The most common cause of shoulder pain is weakness within the rotator cuff muscles (a group of four muscles that support and surround the shoulder).  Wheelchair use typically puts these shoulder muscles under strain through:

1. Manual propulsion of the wheelchair 

2. Repeatedly lifting things overhead

3. Improper wheelchair transfers which force load onto weaker muscle groups

4. Muscle imbalances

5. Poor sitting position 

Focus on technique

Good technique is essential in strength training because if exercises are done badly and without due care, they make problems worse by exacerbating muscle imbalance, poor sitting and scoliosis. Rehabilitation should reinforce the importance of correct posture and teach safe transferring technique to limit the risk of injury. 

Combining strength and flexibility work

Key muscles to target through a progressive strength programme include the rhomboids, latissimus dorsi, triceps, deltoids and rotator cuff muscles. In addition, incorporating movements to encourage flexibility are vital to safeguard shoulder health. Stretching the pectoralis muscles (pecs) and scalenes (side neck muscles) can significantly improve flexibility as well as overall posture.

A strength and conditioning programme should include these vital components:

1. Muscle activation and motor control. Muscle activation and motor control are very important and are sometimes overlooked when developing a strength programme. Teaching proper technique and activating the correct muscle groups at the correct time is important in Activity Based Rehabilitation (ABR) as without practice and feedback, optimal muscle activation and conditioning cannot be achieved.

This requires repeated practice which then leads to the development of skills. When improving a skill movement, the Central Nervous System (CNS) organizes the Musculoskeletal system (MSK) system to create and improve skilled movements. Motor Control relates to how the CNS impacts muscle activation with neural input to gain the desired movement (Banks and Khan et al, 2010).

2. Muscle strength, power and endurance. Strength training is important when weakness compromises function. Strength training is useful in the prevention and treatment of degenerative changes that occur from the repeated use of the shoulder’s rotator cuff muscles.

Our Activity-Based Rehabilitation protocol addresses the common problems facing manual wheelchair users by improving muscle strength, endurance and flexibility while activating neurological function.  Several members our team are specially trained in strength and conditioning.  By combining this approach with physiotherapy techniques in the delivery of our activity-based protocols, we are able to build strength, increase flexibility and guard against repetitive strain injury in the shoulders and other joints.