Dementia & carers wellbeing guidance

The types of dementia

There are over two hundred subtypes of dementia. The most common are Alzheimer’s disease, vascular dementia, Lewy body dementia, frontotemporal dementia and mixed dementia.

Alzheimer’s disease

Alzheimer’s disease is the most common type of dementia in the UK accounting for around 60% of diagnosis. It’s caused by a build-up of proteins in the brain which damage the brain cells’ ability to transmit messages. There is no cure, but medication is available to help slow its progression, and early diagnosis is key.

The symptoms of Alzheimer’s disease tend to get worse over time. They include:

• Difficulty remembering recent events, but often having a good memory for past events
• Poor concentration
• Difficulty recognising people or objects and avoiding using names altogether
• Worsening organisational skills
• Confusion
• Disorientation
• Slow, muddled, or repetitive speech
• Difficulty performing everyday tasks such as cooking, paying bills, and shopping
• Problems with decision-making

Vascular dementia

Vascular dementia is the second most common type of dementia. It’s caused by problems in the supply of blood to the brain, commonly due to strokes or ‘mini strokes’ called Transient ischaemic attack (TIAs). Changes tend to be sudden when someone suffers a stroke or TIA, but the damage may level off rapidly. In cases of larger strokes and TIAs, the damage may become more permeant and the person doesn't return to their same self after time.

Vascular damage can also take place in the smaller vessels of the brain and symptoms may be more gradual.

The symptoms of vascular dementia are often like Alzheimer’s disease, such as memory problems, disorientation, and difficulty with communication. However, symptoms can depend on which area of the brain has been affected and may include specific problems with:

• Language
• Reading
• Writing
• Sudden changes in mood
• Walking
• Bladder control

Lewy body dementia

Lewy body dementia is a progressive condition that affects movement and motor control, for example making it difficult for someone to dress or feed themselves. Memory is often less affected than with other types of dementia.

A person with dementia with Lewy bodies might:

• Be prone to falls
• Have sudden bouts of confusion
• Have tremors (shaking or trembling, like Parkinson’s disease)
• Have trouble swallowing
• Experience disrupted sleep patterns due to intense dreams/nightmares
• Have sight and hearing hallucinations
• Shuffle when they walk

Frontotemporal dementia

Frontotemporal dementia affects the frontal lobes of the brain which controls things like behaviour, learning, and personality. While it can affect people of all ages, it is more common to affect people aged 45 to 65 years than those aged 65 and over.

Frontotemporal dementia can be difficult to diagnose. It’s sometimes confused with depression, stress, anxiety, psychosis, or obsessive-compulsive disorder (OCD). It is however often characterised by inappropriate social behaviour and a lack of inhibitions. Eating patterns can also be affected, with people suddenly bingeing on food, especially sweet foods.

Reducing your risk of dementia

Research on dementia is constantly evolving, but some recent studies have suggested that there are some lifestyle choices that can help prevent or delay the onset of dementia and slow some of the more progressive and debilitating symptoms.

Some lifestyle factors include:

• Regular exercise - just a few walks a week can reduce your risk of developing dementia.
• Social engagement - staying connected with friends and family can help avoid isolation as we get older.
• Healthy diet - type 2 diabetes, high blood pressure and high cholesterol and obesity are all risk factors for developing dementia.
• Quality sleep - scientific research suggests that if you don’t get enough sleep, you are at increased risk for dementia and other health conditions.
• Stress management - stress can have long-term impacts on brain function as we age, including interference with cognition, attention, and memory.

Remember that dementia is because of disease effecting areas of the brain. The more we do to keep ourselves active, health, and mentally well, can all reduce our risk factors of developing diseases that are known to contribute to dementia.

Recognising your role as a carer

There's often a myth around being a carer that if a loved one needs care it's just part of your relationship - therefore, you're not a carer, you're just fulfilling part of what's included in that relationship. It's not to say that this is untrue, but there are additional benefits from recognising your role as a carer.

Embracing the label of carer opens pathways to support, and helps you recognise your own needs easier. It takes people on average two years to recognise their care giving, meaning they're missing support for both the person they're caring for, but also for their own needs.

A carer may be someone who helps with:

• Administer medications.
• Cooking or cleaning.
• Household chores.
• Finances.
• Emotional support.
• Staying on top of medical appointments.

There is no shame in recognising your role as a carer, but there can be cultural barriers and expectations that make it more difficult to recognise a care giving role. Shame can often take the form of feeling guilty that you're not being a good member of the family, and not caring enough.

How the Bank Workers Charity have helped others

Sophia lives with her partner Mia who was diagnosed with dementia. Sophia worked full time of a bank as well as supporting Mia by preparing her meals, administering medication and providing general care. As the condition progressed, Mia was requiring more care and it was putting a strain on the relationship. Mia often becomes frustrated and agitated and supporting her was leaving Sophia exhausted and a bit numb with waves of grief. In a discussion with her manager, they explored reducing her hours and it was suggested she contacted the Bank Workers Charity.

When Sophia contacted through live chat on their website, the booked in an appointment. At the appointment, the caseworker let Sophia talk at her own pace, listening to what she had to say. With the support of the BWC case worker, Sophia was supported by:

• Being signposted to a local carers' organisation who could offer the couple support.
• Helping the couple apply for benefits that they were entitled to, including disability support which they'd previously been declined. With the support of the BWC, they were able to successfully secure this support. Had it not been successful, the case worker would have helped the couple appeal the decision and guide them on what they needed to do.
• Provide practical information on setting up power of attorney (POA).
• Sophia took up counselling with Relate that BWC referred her to, and financially supported her with. This helped her deal with the grief she was filling and with the changing dynamics in the relationship.
• Sophia was referred for a carers assessment, and Mia for a care needs assessment with their local council. This type of assessment helps identify what type of needs both the carer and the person needing care have.

Getting a needs assessment

During the initial stages of dementia, there are usually no or few barriers that prevent someone from remaining in their normal home and continuing to care for themselves normally. As the illness progresses, it may become increasingly difficult without additional support being in place.

At this point, it’s recommended that a needs assessment is carried out by the local council's adult social services. It comprises of answering questions about health, lifestyle, and the progression of the condition, to help identify what caring needs exist and how these should be met with support. Some examples include:

• Home care help with cleaning and shopping.
• Disability equipment and adaptations to the home.
• Day centres which give carers a break from every day caring needs and help reduce isolation.

There is help available from organisations such as Age UK or Citizens Advice in completing a needs assessment. There's lots of information on the NHS website relating to getting a needs assessment. And Carers UK have a downloadable factsheet available.

Wellbeing of the cared for & care giver

It's important to look after the wellbeing of yourself as a carer as well as the wellbeing of the person you're caring for. 

Tips for caring

• When you're caring for someone, they may not have a great memory, but if they do remember things, it's likely to be the way that you've made them feel.
• It can be easy to get frustrated, and this happens when needs aren't being met - reminiscing rather than asking to remember or redirecting rather than trying to reason can help change how you and they feel.
• Activities that are calming are useful and can help reduce isolation. Singing has been shown to help do this.
• Simple aids can help people to maintain their independence for long. Motion sensor light can help prevent injury and help with orientation. Pulling a curtain across a door can help deter someone for leaving their house while confused. Jelly drops can help with maintaining hydration.

Needs of the carer

• Join your local carers organisation - it gives you access to free services in your local community, and a reliable source of knowledge. They also know what you're going through as a carer and will help you caring for yourself.
• Prioritise self-care, respite and breaks are necessary to help you provide care. Don't forget about your own health while you're caring.
• Maintain daily movement - keep your body moving as it helps release stress. Just 10 minutes a day can have an impact on your mental and physical wellbeing.

Accessing financial support

In cases when equipment or adaptations are not able to be provided by social services, the local authority or other organisations may be able to supply a grant or other form of assistance. Some of the main types of support available are outlined below.

Local authority

Disabled Facilities Grants are managed by your local authority and can help towards the cost of adapting a home. An application form should be available from the grants department of your local authority offices.

The Social Fund

Some people may qualify for a budgeting loan from the Social Fund to help with the cost of minor repairs or improvements to their home. Typical eligibility criteria include those in receipt of:

• Income support
• Income-based Jobseeker’s allowance
• Guarantee Pension credit

More information about the Social Fund, including eligibility criteria and how to apply, is available at local Jobcentre Plus offices or online.