There are around 850,000 people in the UK currently living with dementia, according to the Alzheimer’s Society. And this figure is expected to rise to 1.6m people in the next two decades.
Counselling can help people with dementia and their carers make sense of their lives, grieve and continue to find new opportunities and meaning, says Danuta Lipinska, a specialist counsellor and award winning trainer in ageing and dementia care.
What is dementia?
“Dementia is not one disease – it’s an umbrella term given to a group of experiences, or symptoms and behaviours that tell us the brain isn’t working as it should,” says Danuta.
Alzheimer’s is the most common form, but there are other types, such as vascular dementia, Lewy Bodies and frontotemporal dementia. Many are associated with an abnormal build-up of proteins in the brain.
“For everyone diagnosed with dementia, the disease process will have its own particular features,” says Danuta. “Changes in the brain will also be influenced by an individual’s underlying physical and mental health, living environment and relationships.”
They may have difficulties with memory, communication, daily activities like bathing, dressing, cooking, eating or shopping, taking care of finances, driving, working or technology that get worse over time. Personalities, relationships and social and sexual behaviour may also change.
Who gets dementia?
“Age is a risk factor though dementia is not a natural part of the ageing process,” says Danuta.
Dementia mainly affects those aged over 65, with one in 14 in this age group having dementia. It increases to one in six people over 80.
But it can affect younger people too. One in 20 people under 65 may develop young onset dementia.
Women are more likely to develop Alzheimer’s than men, with high blood pressure, obesity, heart disease and stroke all potential contributory factors.
How do you find out if it's dementia?
If you're worried you or a loved one might have dementia, see your GP for an initial assessment.
“There are more than 100 conditions that could cause someone to look as if they’re experiencing a dementia,” says Danuta. “Most are treatable and reversible, but early diagnosis is really helpful.”
Your GP may refer you to a memory clinic, a neurologist or old age psychiatrist. They’ll schedule tests and possibly a CAT scan to check there are no other causes of the symptoms, such as a tumour or trauma. They'll also check to see if there’s evidence of stroke or if the brain tissue has shrunk, showing that brain cells are being lost as a result of disease.
What can you do if dementia is diagnosed?
“At first, this may come as a shock and feel like the most devastating news,” says Danuta. “Unlike other long-term conditions, dementia affects our unique abilities to be in charge of ourselves, our relationships and our everyday lives.
“But that doesn’t mean the essential person is no longer there. They are, but they may need more time for the brain to process information and to make sense of the world and their everyday lives. They may become focused in the moment and need patience and support to retrieve information stored away in the brain.”
People diagnosed with dementia are not only able to live well, but can develop new hobbies, skills and abilities. Danuta says: “Because most dementias take many years to develop, there's time to learn as much as we can and put things in place for the future that may otherwise cause anxiety and distress.”
How do we relate to someone with dementia?
Danuta stresses that a person with dementia is first and foremost a person with dementia, rather than a person with dementia. “When we stay focused on the person and their unique identity and interests, and the things that gave them pleasure, we can continue to stay connected,” she says.
People living with dementia not only have a past and a present, but a future. That future may not look like what they or you had imagined, but taking each day as it comes can reduce the anxiety, disappointment, loss and grief the unknown can bring.
She advises: “Speak and interact as you normally would, but perhaps use shorter sentences and speak more slowly. Keep things simple, your voice calm and your face visible when possible.”
How can we support someone with dementia and ourselves?
Danuta's advice is to:
- be your genuine and authentic self
- stay connected - talk to them and include them in decisions and plans about their day, their dreams and their care
- eat healthily and exercise regularly, in the fresh air if possible
- get plenty of rest and sleep
- enjoy fun activities together, and that includes sex and intimacy for singles and couples
- keep your friendships, hobbies and interests alive, though these may change. More and varied activities might arrive when you least expect them
- ask for help and figure out what support means to you. We’re all different. People want to help but it’s easier if you can be specific - you don’t want a freezer full of casseroles but no one to take the books back to the library
- if you’re the carer, find support for yourself and create opportunities to live your own life as much as you’re able, even though you prioritise the needs of the person you support
- take advantage of the support groups, activity centres and specialist programmes which will be available again in person for men and women living with dementia
Can counselling help with dementia?
It's important that you speak to a counsellor who is trained and experienced in working with dementia.
Danuta provides bespoke counselling services for people living with dementia and their carers. She says: “Some of these feelings and challenges, and many others, can be experienced by both carers and people with dementia.
“You may not want to talk to your friends and family about how you’re feeling, or your concerns for the future. It's not unusual to feel depressed, anxious, lonely, frightened, exhausted, or as if life isn’t worth living."
“Talking to a trained, qualified and professional counsellor can bring a great sense of relief. It can reduce your isolation and loneliness and provide a safe and confidential space just for you to explore your experiences and feelings."
“A person living with changes to their brain and ability to communicate, whether from early memory changes or a diagnosis of a dementia, can still benefit from counselling well into the experience of dementia. Indeed, research tells us that talking therapies help to create new pathways in the brain. This means enhanced possibilities for communication, creativity and enjoyment while living with dementia, that we had never before imagined."
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