Delighted to share with you this guest blog by Nicola L.Wheeler and Derek Fisher.
Having had personal experience of caring for a grandmother who had dementia, Nicola has furthered her interests in dementia care through professional training as a clinical psychologist and working with adults and older adults with dementia diagnoses in the NHS. Nicola is particularly interested in group therapeutic opportunities for people with dementia, and having trained as a systemic practitioner, she values working with carers, family and friends.
Derek Fisher is a house manager for a charity that provides sheltered accommodation for disabled people: allowing them to live independently . Derek has had a keen interest in dementia for the past 16 years and has worked in social care. Derek is involved with the dementia assistance card and has been from its inception. He is also campaigning for a national 24/7 dementia helpline. Derek lives in Essex and his hobbies include football, cricket, reading and blogging.
Although data relating to suicidality and dementia is limited, it is generally acknowledged that social withdrawal and isolation, and lack of understanding from others, are significant risk factors for suicidal thoughts and behaviours in people who experience mental health difficulties. Working with people with dementia, and their families, we have both encountered reports of suicidal thinking.
In recent years, there has been much investment into raising public awareness/understanding of dementia, including “Living well with Dementia: a National Dementia Strategy”. However, stigma and negative thinking continues about dementia, and mental health in general. It is this negative societal context which may cloud or dominate the thinking of a person with dementia and lead to thoughts and beliefs that life is not worth living as abilities, and the person they are, will be lost as the illness progresses, and increased care needs put strain on family and create feelings of guilt regarding how their illness affects those they love.
It is important to recognise there is life beyond a diagnosis of dementia, as evidenced by people who are “living well” despite their dementia diagnoses such as Chris Roberts, Christine Bryden and Peter Ashley.
For many people and their families, an accurate and timely dementia diagnosis can be extremely helpful, as it helps make sense of things which may have been a cause of frustration; perhaps even explaining why arguments have been happening as memory has begun to fail. To reduce distress and negative repercussions consequent to receipt of a diagnosis, it is important that assessments are preceded by supportive and informative pre-assessment counselling. This provides space to consider what dementia is, and the pros and cons of receiving a diagnosis, therefore, ensuring the person is giving informed consent to the assessment.
As professionals, we recognise that it is vital to involve family in the diagnostic process at the earliest opportunity, perhaps through a family meeting to share the diagnosis and think with them about ways forward, or through post-diagnostic psychoeducational and practical groups to create supportive new habits and routines.
Fear and lack of understanding can result in family and friends backing away so isolating the person with dementia and their carer. Involving, informing and skilling up family and friends helps prevent such distancing and possible feelings of helplessness. Health and social care professionals, as well as Alzheimer's Society Dementia Advisors and other such organisations, have a key role to play in providing information and ensuring the application of this understanding to enable people with dementia to live well. This connection with, and understanding from, professionals, family, friends and others also helps protect against co-morbid depression as the person recognises the support and care available to them.
Given how vital connecting with people and having others understand and validate your experiences is to well-being, a protective factor for suicide prevention amongst people with dementia and their families is community-based initiatives which bring people together. These include Alz or dementia cafes, and therapy group sessions like memory management and cognitive stimulation. People may be sceptical about accessing such support for fear that they would not fit in, or that the content of sessions is perceived as “too childish” or “irrelevant”, hence it is the job of family, friends and professionals to say “don’t knock it until you've tried it for yourself”. These groups provide space for sharing of knowledge, experiences and understanding, but also facilitates development of new friendships with people who understand dementia and behaviours that challenge as unmet needs and, therefore, do not need explanations.
Accessing such groups and evidenced-based therapies also provides the person with dementia with appropriate stimulation and have been found to be as effective as medication like donepezil/aricept for slowing down the progression of dementia. Medication has a role to play also e.g. for enhancing cognitive functioning, managing cardio-vascular risk factors like high blood pressure and high cholesterol, helping with mood or anxiety, reducing delusions and hallucinations, and as a last resort for behaviours that challenge. However, medication is not suitable for all forms of dementia, or all people, but such social support and therapy groups can and should be readily accessible.
Blogs are a good source of support e.g. Alzheimer’s Society’s Talking Point, and social media groups on Facebook and Twitter. Recognising the value of talking, the Alzheimer's Society’s and Dementia UK’s telephone helplines can afford a lifeline at times of negativity as the person on the end of the phone is not there to judge but to offer support.
For other sources of stimulation and support, we readily advocate use of tablets/iPads and the wide range of apps available to meet individuals’ personal tastes/interests e.g. quizzes, brain training, games, mindfulness. Other apps can support learning new routines and control assistive technology.
Meaningful connection with music is a powerful therapeutic tool, especially for people with advanced dementia as Naomi Feil demonstrates in YouTube videos of her work with Gladys Wilson. Music can be stimulating but also soothing.
In summary, we hope that the ideas in this blog will help people, and their family/friends, to accept their dementia diagnosis, consider ways forward to overcome dark or negative thoughts, and recognise that there is the capacity to live well. It is pertinent to remember that accessing meaningful stimulation/occupation, and maintaining a role or sense of purpose for the person with dementia for as long as possible is vital for optimal well-being, as we all want to feel valued and needed.