Movement
The terms mobility and movement are often used interchangeably to mean the same thing.
Dementia can impact someone’s overall mobility (walking and moving around) as well as their ability to perform fine motor tasks (the smaller, more precise movements that use the muscles in the hands, fingers, feet, and toes).
Being immobile is not necessarily the highest mobility need or movement disorder that a person can have. For example, mobility needs can be as intense and complex because of hypermobility as they are for people with significantly reduced mobility levels. Likewise, the unpredictability of even slight changes in a person’s movement abilities can sometimes have as much or more of an impact than predictable bigger changes in mobility. For example, occasional loss of balance which comes and goes is more difficult to plan for and accommodate than a consistent difficulty in getting in and out of a car.
Having to accommodate and live with changes in the way we move has wide ranging implications. Even slight changes can increase the risk of falls or stumbles, have implications for safe transferring, moving and handling, and can impact pain levels and skin integrity. Likewise, having less control over the way our fingers perform fine motor movements can have a huge impact on our quality of life, when, for example, it impacts our ability to maintain hobbies or perform the general tasks of daily living (see the RDS website page on engagement for further information about adapting activities).
Many movements that we typically take for granted, can be affected by dementia. In some types of dementia, such as Lewy Body dementia (LBD) , Progressive Supranuclear Palsy and Corticobasal Degeneration movement and mobility problems occur as a relatively early symptom. In other types of dementia, movement and mobility are affected later, as the disease progresses.
Changes in mobility typically have the potential to increase the risk of falls. While the tips, strategies and adaptations described on this page provide a range of suggestions to help minimise that risk, it is important to request a referral to both a physiotherapist and/or occupational therapist in order for needs to be properly assessed. This referral is usually triggered via the GP, but there are alternative referral processes if required or necessary.
Why do changes in mobility happen?
Many factors come together to cause changes in movement and mobility levels for people living with dementia. Some are related directly to the way in which cells and message transmitting systems are being damaged or lost within a particular part of the brain.
- Dementia can damage the areas of the brain that are directly responsible for movement, coordination and balance, thereby reducing a person’s physical ability to coordinate movement. While the frontal lobes have a role in initiating movement, the cerebellum, which is located behind the brain stem, is responsible for fine tuning this movement by coordinating fine motor movement, balance, and the brain’s ability to determine limb position. Loss of cells within either of these parts of the brain can have a significant impact upon our ability to initiate, control and coordinate movement.
- When cells are damaged or lost, the brains’ ability to control the movement of our muscles is reduced. For example, if messages about needing to move are not successfully conveyed from our brain to our legs, the way and speed at which we walk will be affected. Similarly, if messages are not conveyed to our arms and fingers, finely tuned or precise movements, such as threading a needle or taking coins out of a purse become more difficult.
- Dementia can cause changes in the way the brain receives and processes important messages about the environment. For example, the sensory messages received by the eyes and transferred to the occipital lobe at the back of the brain may not be processed fully or accurately because of the damage that dementia has caused in this part of the brain. Changes and damage to these cells at the back of the brain lead to difficulty judging depth, speed or distance. Damage to brain cells in this part of the brain can cause many other problems with vision, all of which have the potential to impact our mobility. These changes can have implications for movement, as they mean it is more difficult to assess our immediate environment and get ourselves from one place to another safely.
- Reduced levels of neurotransmitters being available to pass on messages about moving.
Other reasons for changes in our mobility come about because of factors associated with these brain changes.
- Behavioural symptoms of dementia can impact mobility. For example, if a person is experiencing apathy, they may be less inclined to initiate activity or less willing to take part in activities, and as such their mobility will be reduced. Conversely, if a person is demonstrating constant or excessive walking habits, their mobility is also impacted, albeit in a different way.
- Musculoskeletal changes and muscle weakness can occur in the middle and later stages of dementia and can impact a person’s mobility as the diagnosis of dementia progresses. As muscle mass reduces, and muscle weakness increases, so movements may become increasingly uncoordinated and slow.
- Not being able to accurately assess the environment we are in impacts our awareness of, confidence about and mobility within that environment.
- Knowing that what we want or intend to do doesn’t always follow through into the action we are expecting our body to make can be very unsettling. A lack of confidence to engage in activities, because of uncertainty or fear can hugely impact mobility, as well as affecting how someone feels more generally (see the RDS website page on engagement for further information about adapting activities).
- Whilst this webinar focusses on balance difficulties in people living with PPA, much of the information is applicable across other diagnoses.
Recognising and accepting changes in our levels of mobility can have a big impact on confidence and wellbeing. Having less mobility can influence the way we live inside our homes, as well as our social life outside of them. It may be helpful to talk to someone about the way we are feeling as a result of the changes in mobility we are experiencing. Changes in levels of mobility may have implications for a wider group of family and friends, for example because they no longer see us at the social events they typically socialised with us at, or because they don’t feel comfortable seeing us at home or other venues. It is important that these people are also given the opportunity to share the impact and implications of these changes.
- See the RDS website information on large and small support groups, and please contact the RDS Direct Support Team by emailing contact@raredementiasupport.org for further support.
- See the RDS website pages on adapting emotionally, adapting practically and wellbeing and empowerment for further information.
Difficulties that are related to these changes in movement include:
- problems using escalators
- tripping
- falling
- spilling
- dropping
- bumping into things
Finding it more difficult to use crockery and cutlery, hold a toothbrush or fasten shoelaces are just some of the examples of incidents which can occur because of changes in our usual movement skills caused by dementia. These incidents may become more frequent, the longer that someone lives with dementia, leading to the need for additional support to maintain independence for as long as possible.
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“I can’t rely on my body because it has become so unpredictable…”
RDS member
Slowness
People living with dementia may move slowly for a number of reasons. As cells within the brain are lost or damaged by dementia, and levels of neurotransmitters decrease, messages from the brain to initiate and control movement take longer to be processed, and the speed at which people move may therefore be reduced.
Changes in the way a person perceives their immediate environment can also impact the speed at which they move about within it. For example, if depth and distance are difficult to judge, we become unsure of the environment in which we are moving and more likely to move more cautiously and slowly within it.
Loss of cells from the frontal lobe of the brain can cause apathy, which means people are less likely to initiate movement, even if they are able.
There are also some common environmental triggers that people living with dementia describe as contributing to the reasons they move more slowly and less confidently, and which contribute to the examples below.
Examples of ways in which dementia can make people move more slowly
“I wish I could move more quickly. My legs work fine but I am just so much less confident about my place in the world around me than I ever used to be. I worry about bumping into things or missing kerbs and edges, and feel safer if I move more slowly these days.”
“He just isn’t able to move around like he used to. His muscles don’t seem to receive the messages that he is trying to send from his brain. It’s so hard to watch, as it is clearly frustrating to see him wrestle with a mind that wants to move but a body that won’t…”
“She used to be such an active person – always the first to suggest a walk or an outing. These days we need to persuade her to do anything remotely active. Nothing seems to interest her or be worth bothering with. It’s frustrating for us as her family, because she is still very able to walk, and we would all benefit from getting out together.”
“It’s as if I can’t trust the sofa to be there – I can see it but I just can’t work out how to get myself positioned to sit down on it. It is frustrating for everyone and really slows everything down in a way I find frustrating and a bit embarrassing…”
Examples of ways in which dementia can make people move more slowly include:
- hesitation and caution about moving due to uncertainty of the surroundings. For instance reflections from mirrors can be confusing and cause debilitating illusions and confusion
- inability to ‘get going’ or to move from a sitting to walking activity
- rugs and mats can appear as holes in the ground, which need to be circumvented or avoided, and which cause people to be uncertain and hesitant in their movements
- shiny floor surfaces reflect light and create confusing reflections and effects which are difficult to navigate
- difficulty working out where a chair or bed is, in relation ourselves and the environment we are in, can make movement slow and hesitant
Stiffness and rigidity
Stiffness and rigidity can contribute to movement difficulties for people living with dementia. People may develop a stiff posture, have difficulty changing position, and have noticeably less smooth movement in their general way of walking.
Reduction in the levels of a neurotransmitter called dopamine is often associated with these symptoms of stiffness and rigidity. Whilst a reduction in dopamine is commonly associated with Parkinson’s disease, it is also a common feature of other dementias too. In Lewy body dementia, the presence of Lewy bodies also contributes to symptoms of rigidity and stiffness.
There are some medications which help increase dopamine levels, but these medications often have side effects which include hallucinations, delusions, confusion, depression, and mania, and so need to be carefully monitored if prescribed. Exercise itself can also help increase dopamine levels to some degree.
In the later stages of dementia, contractures lead to additional stiffness and rigidity. Contractures are a relatively common complication in dementia, involving the chronic loss of joint mobility caused by structural changes that cause tightening in the muscles, tendons or other soft tissues. Joint contractures can lead to further complications and, in some cases, permanent disability.
Stretching exercises can help reduce contractures, as can splints and casts, and referral to a physiotherapist is advised at the earliest opportunity in order to avoid longer-term complications. In some cases, medication can help ease the contractures, but these need to be carefully discussed with a medical professional.
In relatively later stages of the disease progression, a persons grasp reflex can be affected, causing them to hold, squeeze or grip very tightly on to objects or people. The grasp reflex is an autonomic response which is typically triggered by stimulation in the palm of the hand. Orthotic splints may be helpful in some cases, but it its important to understand that people living with dementia do not realise how hard they are gripping, nor do they do so with any intention to cause hurt. As well as the autonomic reflex being outside of direct control, people living with dementia are not necessarily as able to interpret the responses of others through their facial expressions or other responses.
Examples of ways in which stiffness and rigidity can occur in dementia
“Her hands seem to close in on themselves and form a grip which I just can’t open. We try to keep her nails short so that they don’t dig into the palms of her hands, but nonetheless the palms of her hands get sore where the skin has got hot and sweaty. We have started to use a soft hand splint to try and keep her more comfortable and prevent the breakdown of the skin.”
“It seems he has lost the ability to bend in the middle. His torso just seems to freeze up whenever he needs to move into a sitting position. He ends up looking very uncomfortable on the chairs and has slipped off the toilet several times. We are using grab rails to help with this wherever we can.”
Examples of ways in which dementia can cause stiffness and rigidity include:
- a person may stop swinging their arms as they walk and lose the ‘bounce’ in their step
- bending at the torso to get into or out of a sitting position becomes increasingly difficult
- muscles may seem to become tight, cramped and clenched up
Jerky movements
Myoclonus is the name that is given to sudden twitching, spasming or jerking that sometimes occurs in people living with dementia. It is caused by the sudden tightening and then relaxation of muscles and can occur in various parts of the body. The person’s arms, legs, or whole body may jerk. The movements are usually sudden and outside of the control of the person. They may sometimes last for only a few seconds, and at other times may continue over a prolonged period. They may vary in intensity and frequency and might occur in one part of the body or all over. The jerky movements can be severe enough to interfere with eating, speaking or walking. People are not always aware that the twitching, spasming or jerking is occurring.
These movements are associated with a range of neurological disorders including dementia. The specific mechanisms that cause myoclonus are not yet fully known, but it is understood that they may be the result of changes in the way that muscles naturally relax, which is linked to overexcitability of the parts of the brain that control movement, and an imbalance between chemicals called neurotransmitters which carry messages between nerve cells. If we imagine the brain to be a very complex electrical circuit, and this circuit goes awry, this could lead to brain signals malfunctioning. This in turn can lead to things such as epilepsy and myoclonus.
It may look as if the person is having a seizure, but they are not, and people generally remain alert whilst they are experiencing myoclonic jerks. It is important to speak to a healthcare professional about these symptoms and to be alert to the difference between myoclonus and seizures which can also occur in dementia.
There is no cure for the type of myoclonus that occurs in people living with dementia, but in some cases, tranquilizers are used to help reduce their frequency and intensity. These drugs are prescribed cautiously because of their known side effects loss of coordination and drowsiness.
Examples of ways in which jerky movements can occur in dementia
“He never seems particularly bothered by the jerky movements themselves– unless they interfere with what he is doing at the time. If we are sitting watching TV and they start, then it is no bother, but if we are eating, or he is holding a drink, then obviously they are more disruptive.”
“We have learned to live with these strange, unpredictable occurrences. At first we got very worried about them and tried all sorts of ways to control them. These days, we just go with them, and that seems to help. Trying to keep relaxed, both physically and mentally, is definitely key for both of us.”
Examples of ways in which jerky movements can occur in people living with dementia include:
- slight or severe twitching of an arm or leg, or both
- whole body jerks that appear to involve every part of the body
- facial twitching
Fine motor movements
Fine motor movements refer to the smaller, more precise movements that use the muscles in the hands, fingers, feet, and toes. They are the movements that are required for example, to turn a door handle or a key in a lock, thread a needle or button up a coat. They are movements that we typically take for granted and can be affected by a diagnosis of dementia.
The cerebellum is the area of the brain that is primarily responsible for controlling fine motor movements. Damage to this area, and a lack of neurotransmitters available to take messages from this part of the brain to the relevant muscle groups, causes a deterioration in fine motor skills.
Examples of ways in which fine motor movement changes occur in dementia
“I don’t like to stay away from home because I find it exhausting having to manage in a new environment. At home we are all set up with ‘easy to use’ gadgets that make life so much easier and pleasant. I feel much more in control and independent when I am at home”.
“I make such a mess these days. Getting food into my mouth from the plate has become quite a challenge. I use a knork which is less fiddly, and I make sure that the table and my clothes are covered before I eat, so as to absorb any spills.”
“We look for clothes with easy fastenings, and where necessary we replace fiddly ones with Velcro. There are some amazing alternatives on the market these days– including shoes that slip on as easily as slippers!”
A reduction in fine motor movement abilities can cause a wide range of difficulties with daily living activities, including difficulties:
- managing culinary utensils
- holding and using a pencil or pen, or a computer mouse
- dialling the phone
- fastening shoelaces
- putting a plug into a socket
- fastening a zip or other fastenings
- getting a key into the lock or turning a door handle
- coordinating the use of a toothbrush, hairbrush or other personal hygiene and make up activities
Seizures
Seizures, sometimes referred to as ‘fits’, are a less common symptom of dementia, but one that is important to be aware of. They are not an anticipated feature of dementia per se, but people living with dementia have an increased likelihood of experiencing them over time. They are relatively unusual in the earlier stages and should always be discussed with a medical professional in order to make sure there is not some other underlying cause, at whatever stage of the disease journey they occur.
Although less common in the earlier stages, seizures can occur at any point in the disease. Anything that changes the structure of the brain increases the risk of seizures. In dementia, the structure of the brain changes as abnormal proteins build up affecting the way the brain cells convey messages to each other.
The brain can be thought of as a highly-tuned and sophisticated electrical circuit. The circuit can get disrupted as a result of accumulation of abnormal proteins and the breakdown of normal brain networks or changes in brain chemistry. This causes an increased potential for seizures, which can be thought of a ‘short circuiting’ within the brain. Not everyone with dementia will have seizures but, as all forms of dementia become more advanced, the possibility of seizures increases and seizures can become more frequent.
People living with dementia can experience seizures which are subtle and are not always recognised. Unlike the more typical type of epileptic seizure where people become unresponsive, shake or fall to the ground, these seizures may take the form of a brief period of increased unresponsiveness or amnesia, sometimes accompanied by involuntary repetitive movements, for example of the hands or arms, or of the face (for example, lip-smacking, swallowing or chewing). The symptoms usually resolve and the person often returns to their usual self, quite quickly. More noticeable seizures may also occur and can be very distressing for those who experience and witness them. These can take longer to recover from and can cause impairments in cognition for some time afterward.
It is important to understand what to do when seizures happen. Maintain a calm and comfortable environment, avoiding any unnecessary interaction whilst supervising a person’s safety until the seizure has passed. Don’t put things in people’s mouths. Seizures that only last for a minute or two don’t necessarily need any further immediate medical intervention but if they go on any longer then an ambulance should be called (more information on the NHS website and in this St. John’s Ambulance video). Everyone who is having seizures of any type or duration should be assessed by a doctor in order to be sure of the best care plan for them.
There are medications which are helpful in preventing seizures, but it is important to consider the advantages and disadvantages of treatments. We need to take a holistic view about how the seizures impact a person, their family and their day-to-day living. As well as treatment to control the seizures, there may be underlying causes apart from the dementia, and which may require separate treatment.
The Driver and Vehicle Licensing Agency (DVLA) are required to be informed of any diagnosis that impacts the safety and ability of a driver– and both seizures and a dementia diagnosis need to be reported to the DVLA and the relevant insurance company. See the RDS website page on driving for further information.
Tips, strategies and adaptations for mobility
There are ways to adapt and maximise mobility abilities and skills. Some will be more effective than others and some will work for some of the time, and not at others. Be prepared to give things a try and to be flexible.
- Ensuring that glasses are worn where necessary, obvious hazards are removed from the environment, shoes are well fitting and comfortable and that where possible lighting is adequate, will all promote the opportunities to maximise mobility as far as possible.
- Depending on our home environment, living arrangements, habits and lifestyle, there are lots of ways we can adapt to accommodate changes in our movement abilities, caused by dementia:
- furniture can be arranged simply, consistently and in strategic places to help keep the environment uncluttered and ‘user friendly’
- cupboards, drawers and wardrobes can be decluttered to make their contents more organised and visible
- knives, forks, plates and cutlery can be adapted to make using it as manageable as possible (see RDS website page on eating and drinking for more information)
- loose rugs can be removed and carpet edges can be sealed to reduce trip hazards
- nightlights in the hallways and in the toilet can help a person to find their way to the bathroom at night
- long electrical cords on appliances can be replaced with coiled or retractable cords
- a shower or bath seat allows a person to be seated while bathing and removes the need for lowering into and lifting out of the bath. Contact an occupational therapist for further support with at-home adaptations
- handheld shower hoses remove the need for as much moving around during the bathing/showering process, as they allow a person to direct the flow of water as desired
- Whilst there is some variation in the way local councils award accessible parking permits, it is worth applying for accessible parking facilities (visit the Blue Badge scheme website for more information).
- Protect against unnecessary falls or accidents due to other causes. Speak to a medical professional if any episodes of dizziness or imbalance occur. There may be underlying reasons for these, and treatments available. Get treatment or pain relief for co-existing conditions that may contribute to movement difficulties, such as orthopaedic (bone) or muscular disorders.
- Medications that increase dopamine levels in the brain (such as levodopa) are sometimes used to help ease motor symptoms.
- Physiotherapy, occupational therapy and the right exercise routines can help improve mobility, strength, and daily living activities. It is essential for healthcare professionals to tailor treatment and support to the specific needs and abilities of each person living with dementia. The progression and management of motor symptoms can vary widely between people, and a tailored approach is essential for optimising quality of life.
- Identifying triggers for particular behaviours and looking for ways to adapt or work around these can help minimise distress and discomfort. For example, helping a person to open up their hand by gently uncurling their fingers might avoid grasp reflexes that are triggered by stimulation of the palm of the hand.
- Assistive devices, such as walking aids or adapted utensils, can be used to help aid movement and maintain independence. See the additional resources section for links.
- Wearing the Hidden Disabilities Sunflower lanyard can help promote an attitude of patience and understanding in the people around us, as well as giving a sense of confidence to the wearer. This can be used together with a ‘helpcard’ detailing information about a person’s diagnosis and relevant contact information. Contact the RDS Direct Support Team by emailing contact@raredementiasupport.org for more information.
- Some people find that carrying a mobility cane means that the people around them are more patient and understanding of their needs. Using a cane with a ball on the end (a ‘ball cane’), which makes a noise when it rolls along, alerts people around us to our additional support needs, and can help us feel more confident. It can be useful on stairs as well to help with judging distances. Speak to an occupational therapist or physiotherapist for advice on the safe use of this.
- Maintaining physical activity as far as abilities allow, can be helpful for wellbeing more generally. Some gyms and clubs can provide a ‘buddy scheme’ which allows for people to be partnered up with others, for assistance in particular activities. There are a range of online exercise classes which can be helpful for some people so long as they are safe and don’t increase the risk of falls or injury. Simply encouraging good posture and daily stretches can have a positive impact on the way we feel about our mobility.
- Allow extra time for any movement or activity. Be mindful that performing fine motor skills and movements can be difficult and may take longer. It is also likely to be more tiring than previously.
- Wearing appropriate footwear (for example closed shoes or boots with flat or low heels, with velcro tabs instead of laces) and alternatives to small buttons or fiddly fasteners on clothes and encourage independence for as long as possible (see RDS website page on dressing for more information).
- Consider replacing chairs and beds with alternatives that are more comfortable and adaptable. Some recliner chairs can be adjusted to accommodate a range of sitting and lying positions as well as gently moving a user into standing position once they are ready to get up.
- Being able to feel the seat on the back of the legs seems to help initiate the sitting activity for some people.
- Carers, family and friends play an invaluable role in supporting people living with dementia to manage mobility changes and symptoms by providing physical support, encouragement, and a safe environment. See the RDS website pages on registering as a carer and asking for help for more information.
People who can help
Many people living with dementia work out ways to adapt to and manage the symptoms that they live with. Conversations with other people who are living with a similar diagnosis often provide empowering and insightful hints, tips and suggestions, shared by those who understand the impact better than anyone. There are some aspects of symptom management which professionals can assist with in meaningful and ongoing ways and it is important to engage the services of professionals where possible.