How to Cope With Dementia Due to HIV

Decline in mental processes is a common complication of HIV infection (and many other conditions). Although the specific symptoms vary from person to person, they may be part of a ...

Forgetfulness, or difficulty in remembering or recalling facts, are symptoms that many people with symptomatic HIV infection report. Often they accompany symptoms of stress, moodiness, anxiety and depression but are more serious if associated with odd behaviour, personality change, disorientation, fits or problems with walking.

Life involves emotional stresses and strains. Being diagnosed with HIV, and living with it, will at times cause such stresses, and some aspects of your life will become more complicated – and possibly stressful – because of HIV. Finding out that you have HIV can lead to a wide range of feelings. It is common to feel fear (including fear of illness or dying), worry, concern about what other people will think, guilt, shame, embarrassment, anger and sadness after a diagnosis. Some people feel numb, and others feel a sense of relief that they have finally found out about their status. You may question how your life will be living with HIV; it can be easy to assume the worst. However, the feelings people have about HIV can change over time, so your initial response to finding out that you have HIV is unlikely to last. Many people find that they gradually come to terms with having HIV, although some aspects of being HIV positive can still make them feel anxious or distressed. Attending regular medical appointments, experiencing ill health, starting or changing treatment, disclosing your status or starting a new relationship can all be sources of anxiety or cause emotional distress. Sometimes these can involve a revisiting or reconsideration of feelings about life with HIV. In the end, many people with HIV will find that their emotional wellbeing is affected by life with the virus from time to time, no matter how successful an adjustment they have made to their diagnosis. Remember that it's perfectly acceptable to have feelings that you find difficult. Although it can be easier said than done, don't feel bad about feeling bad. Acknowledging and accepting your feelings is an important first step to working them out. Even though it can be hard to feel this way, experiencing emotions like anger, anxiety and fear are often normal responses to events during your life, including some of the adjustments you may have to make because of HIV. It’s also important to know that there’s a lot you can do to look after your emotional wellbeing. Talking about your experiences and feelings with a loved one, friend or another person with HIV can be a big help. When you are finding your thoughts and feelings difficult to understand or work through, psychological therapies can be helpful. Your HIV clinic should be able to help you find a suitable therapist if they don’t offer such services themselves. (See page 38 for more help with finding a therapist.) Looking after the basic requirements of life – getting enough sleep, eating properly and managing stress – provides an important foundation for your emotional wellbeing. So if you are having problems with these daily activities for any reason, it may be good sense to ask for professional help.  Trouble sleeping is the most widely reported psychological disorder in the UK, affecting 30% of the population. Many people with HIV report difficulties relating to sleep (it was identified as the third most significant issue in a survey of people living with HIV, with 70% of respondents reporting some problems with sleep). Difficulty going to sleep or staying asleep can be the result of worry, stress or mental health problems, or the cause of them. For many people, having a drink or occasionally using recreational drugs is a pleasurable part of life. However, alcohol and mind-altering drugs are also used by many people for short-term relief when they are experiencing difficult feelings. They might offer temporary relief, but in the long run relying on them is likely to make your feelings harder to deal with. Prolonged and excessive drinking and drug-taking can also damage your physical health and affect how your body absorbs anti-HIV drugs, as well as making it harder to remember to take your HIV treatment. Feeling isolated can be a source of distress, or can make feelings of distress worse. Finding ways of interacting with other people in ways that you are comfortable with is important to good emotional wellbeing. Many HIV support organisations offer one-to-one and group peer support. You may also want to join non-HIV-related organisations, based on your interests, to meet other people and help you feel less alone. Taking part in productive and enjoyable activities can help promote a feeling of wellbeing. For example, volunteering in your local community – perhaps with a charity or community group – can be a good way of meeting people, developing new skills and increasing self-esteem and confidence, as well as of helping others. You can find out more about volunteer work and see what types of opportunities are available, on the Volunteering England website: www.volunteering.org.uk. Having interests that you find engaging and rewarding (in any way) are important. Setting goals for yourself can give you a sense of purpose. It's most helpful if these goals are realistic and can be achieved by taking small, measurable steps. Some people find that faith or spirituality are important sources of comfort and stimulation. Prayer, meditation or quiet reflection can be helpful for reducing stress and loneliness. And religious or cultural communities can be key networks of support and social interaction.

Frontotemporal Dementia is a form of progressive dementia. Learn more about Frontotemporal Dementia
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