According to the Alzheimer’s Society, 1 in 4 people know someone close to them who is living with dementia – but is dementia hereditary?
It is a known fact that families look alike. This is because of genes. Genes are complex structures comprised of DNA that make up who we are, where we’ve come from and in some cases, where we’re heading in the future. Many people living with dementia are concerned they may pass on the condition to their loved ones through their genes, while some people affected by dementia through a close relative worry they may inherit it.
Is dementia genetic?
If your close relative has dementia, such as a parent or grandparent, it is highly unlikely you will inherit the condition. In some very rare cases, there may be a genetic link. However, this makes up only a very small portion of diagnosed cases.
Young-onset dementia
Most people begin to show symptoms of Alzheimer’s disease in their late 60s, 70s or even 80s. However, in some cases, the symptoms may appear much earlier. This is known as young-onset Alzheimer’s disease. The symptoms of young-onset Alzheimer’s disease include…
- Sudden changes in personality and behaviour
- Difficulty completing everyday tasks
- A lack of motivation and difficulty concentrating
- Depression and anxiety
- Trouble making decisions and solving problems
As people living with young-onset dementia are in a younger age bracket than people living with Alzheimer’s disease, they may also face additional challenges which can result in higher levels of emotional distress. These challenges include…
- Difficulty with employment and their career
- Additional responsibility caring for parents or young children
- Managing financial commitments such as a mortgage or other loan
Can young-onset Alzheimer’s disease be inherited?
In the majority of cases, Alzheimer’s disease cannot be genetically inherited. However, in cases where a person is diagnosed with young-onset Alzheimer’s disease, it is far more likely the condition has been inherited. In very rare cases, it is very obvious a person’s condition has been inherited. This rare form of dementia known as Familial Alzheimer’s disease is caused by rare genetic mutations that are found in 7 – 12% of people diagnosed with young-onset Alzheimer’s disease. Familial Alzheimer’s disease accounts for less than 1% of Alzheimer’s disease cases overall and is considered very rare.
Frontotemporal dementia
Compared to Alzheimer’s disease, which is the most common type of dementia, Frontotemporal dementia (FTD) is incredibly rare. As Frontotemporal dementia can be inherited genetically, a diagnosis of FTD can cause an enormous amount of stress on a person who has children or grandchildren.
Will Frontotemporal dementia always be passed on?
If you or a loved one has been diagnosed with Frontotemporal dementia, you may be wondering how likely it is the younger members of your family will develop the same condition.
Most of the time Frontotemporal dementia is not genetic. According to the Alzheimer’s Society, roughly 40% of people with FTD have at least one close relative diagnosed with dementia. In general, the more relatives you have with Frontotemporal dementia, the higher chance you will have of developing dementia.
There are also different types of FTD which, depending on the type you or your loved one develops, can increase or decrease the likelihood of you or another close relative developing dementia. For example, someone living with the behavioural variant of Frontotemporal dementia is more likely to have another close relative develop dementia than someone living with primary progressive aphasia (PPA). The symptoms of this rare type of Frontotemporal dementia often start with progressive aphasia, a condition where someone may have trouble communicating, understanding and/or finding words, and expressing their thoughts and feelings.
Other rare types of dementia
In even rarer cases, there are other types of dementia that can be passed down through a family. Conditions such as Huntington’s disease and Familial Prion disease often give descendants a 50/50 chance of developing the same condition as their parents or grandparents. This is because they are caused by a single dominant gene.
Huntington’s disease
Huntington’s disease is a condition that triggers a slow, progressive cognitive decline, and usually affects people between the age of 35 and 45. Huntington’s disease is rare, affecting about 8 in 100,000 people here in the UK. A diagnosis of the condition can often cause enormous emotional stress because it is genetic.
Huntington’s disease causes dementia. Much like Alzheimer’s disease, people living with the condition may experience trouble with memory and mental clarity. They may also find it difficult to concentrate, make plans or remember dates or events.
If you are supporting a loved one with the condition, you may find they can recall recent events but forget how to perform everyday activities. In contrast to people living with Alzheimer’s disease, a person with Huntington’s disease is usually able to recognise people and places until the very late stages of their condition.
Familial Prion disease
Like dementia, Prion disease is an umbrella term coined for a group of conditions. Prion disease affects the nervous system and causes a progressive decline in cognitive function. The symptoms of dementia caused by Prion disease include…
- Sudden changes in mood
- Depression and anxiety
- Trouble with memory
- Difficulty with mental clarity, including making plans
- Trouble judging situations and making decisions
Roughly 10 – 15% of people living with Prion disease have the genetic form of the condition known as Familial Prion disease, which can be passed down through a family.
Dementia caused by other health conditions
Dementia can result from other health conditions. It’s important to remember that dementia isn’t always triggered by other conditions. However, if you have a close relative who has recently had a stroke, or who has underlying health conditions such as heart disease, you may have a similar genetic disposition.
Vascular dementia
A type of dementia caused by reduced blood flow to the brain, vascular dementia is a type of dementia in which people diagnosed will experience a decline in cognitive ability. Although vascular dementia is not genetic, the underlying health conditions that can cause the condition can be inherited. Causes can range from diseased blood vessels to complications following a stroke.
What causes vascular dementia?
The cells within your brain require a constant supply of nutrients and oxygen, which are delivered by blood vessels found throughout the human body. This system, known as the vascular system, is very intricate. The system within your brain in particular, is both complex and fragile. If it becomes damaged and blood cannot reach a person’s brain cells, your brain will not receive what it needs to function correctly. Essentially without sufficient and constant blood flow, brain cells will die. This can result in vascular dementia.
The most common types of vascular dementia are subcortical vascular dementia and stroke-related dementia. Vascular dementia can also develop from smoking, an unhealthy diet and/or high excessive consumption of alcohol. However, it can also result from underlying health conditions that can be genetically inherited.
Stroke-related dementia
Vascular dementia is also known as stroke-related dementia and is the second most common type of dementia after Alzheimer’s disease.
When a person experiences a stroke, the brain receives little to no oxygen and nutrients. This can damage the delicate cells within your brain and cause them to die. The most common symptoms of a stroke include
- Sudden loss of feeling in part of your body
- Difficulty with speech
- Vision loss
- Trouble balancing
- Sudden changes in behaviour or mood
Vascular dementia is not always caused by a large stroke and can also be triggered by a series of smaller strokes. People who experience a series of small strokes often don’t realise they are even having them.
Will I develop vascular dementia following a stroke?
If you or a loved one recently experienced a stroke or series of small strokes, you won’t necessarily develop vascular dementia. However, you may be more likely to develop the condition.
Some people who experience a stroke have difficulty with their cognitive ability immediately after, but it eventually improves over time. If your symptoms haven’t improved, or your loved one is struggling following a stroke, it is best to speak with a GP.
Subcortical vascular dementia
Also known as Binswanger’s disease or small vessel disease, subcortical vascular dementia can develop from the narrowing of small blood vessels deep inside your brain within the subcortical area. As these delicate blood vessels narrow, the amount of blood supplied decreases which can cause tissue and cells within your brain to die.
The first symptom of subcortical vascular dementia is cognitive slowness. For example, a person living with subcortical vascular dementia may have difficulty writing. They may also experience difficulty with movement and have trouble with their balance, memory and speech.
I have dementia – now what?
If you’ve just been diagnosed with dementia, you may be wondering the best way to proceed. A dementia diagnosis can be overwhelming and upsetting. It’s important to give yourself time to adjust. You may find it helpful to look for solace and community in the form of a local support group, memory cafe, clinic or therapist. If you can, it’s also important to share your diagnosis with your friends and family and communicate with them. Dementia can be a socially isolating condition. It’s important to hold your loved ones close.
Other steps you can take once you are ready include…
- Getting your papers in order – It’s important to remember dementia is a progressive condition. While it may seem overwhelming, it’s crucial you get your papers in order. This includes setting up direct debits for any bills, as well as ensuring your will is up to date. A person living with dementia can legally make or change a will providing they can prove they understand the changes being made and what the effects will be. As dementia impacts every person differently, it’s best to ensure everything is in order as soon as possible.
- Claim benefits – If you have been diagnosed with dementia, particularly young-onset Alzheimer’s disease, you may experience financial strain which can place undue stress on you and your loved ones. It’s important to make everything as easy as possible. This includes ensuring you are claiming the benefits you’re entitled to.
- Choose a power of attorney – Make sure you choose a trusted relative or friend to be your power of attorney. This person will manage your affairs if you are unable to, including your property, medical treatment and care, as well as your finances.
- Create a memory book – Although this will appear less urgent than other tasks, creating a ‘memory book’ can help you stay connected with your loved ones, and recall precious memories. Your memory book can be whatever you like but may include photographs, a mixed tape or digital playlist of your favourite music, handwritten notes or even keepsakes from your childhood.
- Inform the DVLA – If you’ve been diagnosed with dementia, you do not have to immediately cease driving. However, if you reside in the UK you will have to inform the DVLA as well as the company that insures your vehicle. The DVLA may arrange an assessment of your driving, including an eyesight test, to ensure you can still drive without putting yourself or others at risk.
- Organise advance care planning – Once you’re ready, it’s important to make plans for your future care. In the UK, this is called an ‘advance statement’ or ‘advance decision’. This plan will inform your loved ones and medical professionals of your wishes in the event you are unable to make decisions in the future.
If you reside in the UK, you can read more about what to do following a dementia diagnosis on the NHS website.
Cognitive Stimulation Therapy (CST)
Although there is no definite cure for dementia, it is treatable. The only clinically proven non-pharmacological treatment currently available is cognitive stimulation therapy (CST). CST is a series of activities carried out over several weeks for the purpose of improving memory and cognitive ability.
Ideal in a number of different environments including residential settings, care homes and community support groups, CST can make an enormous difference in the lives of people affected by dementia. Memory Matters hosts regular CST sessions as well as dementia support groups which can be accessed in person, online through the Memory Matters website or through HLP – U page
Dementia can be a socially isolating condition. If you’re affected by dementia, it might pay to have a look in and around your local community for a support group or CST session that can offer inclusion and a safe environment. It’s never too early to find kinship in others who may be processing similar feelings and emotions following diagnosis.
Living with dementia at Memory Matters
It’s important to remember that a dementia diagnosis does not spell the end of a worthy life. It is simply the next chapter of a novel that in most cases, is far from finished.
A person living with dementia may worry about passing on the condition to close relatives, especially young family members such as children or grandchildren. In very rare cases, a person may inherit dementia from a close relative such as a parent or grandparent. However, if you or a loved one is living with dementia, the good news is that in most cases the condition is not genetic.
For more than ten years, Memory Matters have worked tirelessly to support people affected by dementia in our local communities. Our ethos is grounded in the intention to provide meaningful services to people living with dementia, empowering them to live well. We also provide support to loved ones, carers, nurses and doctors, as well as anybody else living with or affected by dementia.
If you or a close relative have recently been diagnosed with dementia, then you may benefit from compassionate support from us. Turn the page and start the next chapter by contacting the team today.