Dementia: Loss, grief and tips for patients and carers

Many people have loved ones or know someone who has a loved one who developed dementia. Some people have lost (through death) their loved ones to dementia, and some are carers for parents or relatives with dementia. 

The Alzheimer’s Society (2023) reports that there are nearly 900,000 people living with dementia in the UK and that this number is likely to rise to 1.6 million by 2040. The rise in numbers is due to increased awareness, which translates to more and more people being diagnosed and treated.

The reality is that dementia is not talked about as much as other forms of mental illness; it needs more attention. It is painful to witness the changes caused by the cognitive symptoms (memory loss and personality changes) as well as the behavioural changes, secondary to dementia. These changes tend to worsen as dementia progresses; the impact of the loss of faculties becomes more pervasive. 

Dementia is a cruel illness, and insidious in nature. It affects anyone regardless of class, colour, gender, or creed. The famous movie, The Iron Lady, showed how one of the most powerful women in the world, Margaret Thatcher, succumbed to dementia in her later life. With dementia, it’s as if the person you once knew dies, and there is a rebirth of a whole new person, albeit in the same body. One must go through a bereavement process, and grieve for the loss of a person who is still alive. There is a real conundrum. The loss is of the old version, and encountering the new version which is altered in many ways. The initial death in dementia is not a physical one, but a psychic one. 

Dementia warps the concepts of time and space, past and present, life and death, the child and the adult, childhood and old age, dependency and independence. It gives merit to what Freud (1922) postulated that "the aim of all life is death", and that in life there is a constant battle between life instincts (Eros) and death instinct (Thanatos). Seeing someone you love succumb to dementia does indeed raise a lot of existential questions. The adult regresses from a state of independence into a childlike state of complete dependence on others. 

In advanced dementia, the functional decline and regression are extraordinary; the person regresses into the past, they may speak in a childlike manner, display childlike behaviours, needing feeding, continence management, bathing, putting to sleep, and all care. Just like a baby. 

At times, short-term memory loss means the person may not recognise the faces of their loved ones. This can be very distressing for all involved. If the person is bi-lingual, they may lose the ability to speak the secondary language and revert to the primary, even if they may not have used it in their adult life. Those with dementia will also go through a grieving process and experience bereavement without an actual death - the death of their healthy self. 

Depression often co-exists with dementia; many people who develop dementia will need treatment for signs of depression. And actually, many carers of dementia patients will also develop physical and psychological health issues secondary to the stress of their role, and the emotional strain.

What is dementia?

Dementia is a neurodegenerative disease, which causes progressive memory loss, personality changes, and a decline in social functioning (NICE, 2018). As dementia progresses, speech can be affected, which impacts communication, as well as functional decline. The loss of faculties leads to a decline in executive functioning abilities. The Alzheimer’s Society reports that 70% of people in nursing homes are people with dementia.

There is a myth that dementia only affects elderly people but this is not always the case. In the UK, the youngest person to receive a diagnosis was in their early 30s. Having a dementia diagnosis is not a death sentence. There are many people with a dementia diagnosis who live healthy and normal lives in society, following their prescribed treatment.

Signs and symptoms of dementia

Cognitive and behavioural changes include:

• forgetfulness, memory loss (short and long-term in advanced dementia)
• not remembering the names of people and places
• losing valuables (keys, wallets) etc.
• confusion-muddled thoughts
• communication difficulties, jumbled sentences
• disorientation - getting lost in familiar places
• falls and accidents proneness
• regression to "living in the past”
• childlike behaviours - giggly and disinhibition
• difficulties regulating emotions - emotional lability
• aggression and irritability
• paranoid and suspiciousness
• wandering 
• functional decline: difficulties with basic skills such as shopping, bathing, cooking and continence

Dementia symptoms are known to worsen in the evenings, a phenomenon known as “Sundowning syndrome”.

Types of dementia

Alzheimer’s

Alzheimer's is caused by a build-up of protein (amyloid) in the brain. There is then a shrinkage of the brain and loss of brain volume. Medication from the group called acetylcholinesterase inhibitors (ACHEIs) is used to slow down brain degeneration. People with Alzheimer's are likely to experience gradual memory loss in comparison to the vascular type which is a more "step-wise" decline. 

Vascular dementia

Vascular dementia is a result of limited blood supply to the brain; due to the narrowing or blockage of small blood vessels in the brain. It can also be caused by vascular accidents (undetected mini-strokes) which create pockets of damage on the brain, as well as major strokes.

VD cannot be treated with ACHEIs. Sufferers have to manage the underlying vascular diseases (high blood pressure, diabetes, heart disease or high cholesterol) to minimise the risk of further accidents and deterioration. A healthy lifestyle is a recommendation.

Mixed dementia

Some people have a combination of both Alzheimer’s and Vascular dementia. This is called Mixed dementia. They will have both AD and VD pathologies and can be prescribed ACHEis to help slow down the degeneration.

Lewy Body dementia

This type of dementia is less common that the others. This is caused by deposits of the abnormal protein, Lewy Bodies, in the brain. It is named after the neurologist Fritz Jacob Lewy, who discovered these Lewy Bodies.

Dementia assessments (UK)

Dementia assessments are carried out by specialist teams in the NHS called Dementia Assessment Services/Memory Assessment Services. Some people have assessments done privately. The assessment follows a medical model; only a psychiatrist can formally diagnose dementia, although a multidisciplinary approach is taken in the assessment and treatment. 

Assessments involve a combination of psychometric assessments, brain Imaging-CT scans and MRI scans, family history, and at times, neuropsychology assessments carried out by clinical psychologists. Physical causes of memory loss must be ruled out before a dementia assessment is made. For example, urinary tract infections can cause delirium which mimics dementia symptoms, albeit reversible. Dementia stages can be viewed as mild-moderate or severe, and receiving a diagnosis in the early stages lead to better treatment outcomes.

Tips for caring for someone with dementia

Improving the well-being of families and carers

People with dementia are incredibly vulnerable. It is important that their families and carers are supported in their roles. Psychoeducation is a part of that. If you are a carer and you are feeling low, experiencing poor sleep, or anxiety, or are finding it difficult to cope, consult your GP and discuss therapy. Therapy will help you process and work through the emotional impact of having a loved one develop dementia (loss and grief). 

If you suspect that your loved one is developing dementia, visit the GP and request a referral to a dementia specialist service for an assessment. Many people will put this off due to fear of what the assessment may reveal, but postponing things will only make the situation worse. Early detection means robust treatment and better outcomes. 

All people with dementia benefit from a healthy lifestyle. NICE guidelines (2018) make this clear – eating healthily, maintaining a fitness regime, having a routine, and doing mentally stimulating activities are all essential to part of the treatment and management of dementia. 

People with dementia benefit from a routine and structure. This minimises the confusion which often leads to agitation or aggression. Arrange day centre attendance where the person can spend time doing cognitively stimulating activities. Use visual aids to orient them, such as clocks and signage. 

Engage in activities that help the sufferer reminiscent of the past, e.g. playing familiar music they used to enjoy, cooking meals they used to like, compiling a family album and going through the pictures together.

Many people feel guilty about letting go and want to do everything for their loved ones themselves. This often leads to burnout, as caring for those with dementia is extremely stressful. Seek help and support from carers and arrange respite to give yourself some time out. 

As a carer/family member of a person with dementia, you are concurrently experiencing grief and loss of the person you knew. This can be spelt by feelings of anger, shame, guilt, sadness, regret, and real helplessness. It's also easy to build resentment in the caring role, as caring for someone with dementia can be incredibly challenging. Many people in this position, if not looking after themselves (a common occurrence in carers) notice a decline in their own health due to either emotional overwhelm, the physical stress of caring, or both. It is important that you maintain your well-being and have a community and support network.

As a carer, make sure you prioritise your well-being. Taking a break and using respite care to enable you to replenish is necessary. Do things that you enjoy - engage in old and new hobbies. 

If the deterioration worsens and the risk to you or the sufferer is getting high, it is best to place the person in a secure environment, e.g. a residential home or care home. Many people struggle with this, as they consider it to be a sign of failure or letting their loved ones down - it is not. As difficult as it may be, this is an act of love for yourself, and your loved one.

 References

• Alzheimer's Society (2023) https://www.alzheimers.org.uk/about-us/policy-and-influencing/local-dementia-statistics
• Freud, S., and Jones, E. (Ed.). (1922). Beyond the pleasure principle. (C. J. M. Hubback, Trans.). The International Psycho-Analytical Press. https://doi.org/10.1037/11189-000
• NICE Guidelines (2018) Dementia: Assessment, management and support for people living with dementia and their careers. NICE: UK