Alzheimer’s - a journey, not a destination

How you can help

The underlying ethos in dealing with Alzheimer’s is to approach your loved one with compassion, patience, recognition of limitations, inclusion and encouragement of their own care.  Forgetfulness and impaired judgement spreads to all areas and can be dangerous. Medical therapies include medications and therapy, including cognitive therapies such as mindfulness. Home therapies and day-to-day adjustments will form the bulk of care.

Communication issues can be addressed using simple and clear wording, repetition, step-by-step instructions and simplification. Holding hands to gently direct attention and reduce distraction also helps. Changes in personality and mood can be mediated by patience, communicating the idea of safety, promoting familiarity in person and place, and simple distractions (at this time) such as familiar music or tasks. It is worth remembering that these changes are transient and will often resolve.

Encouraging gentle exercise, reducing caffeine and promoting high-energy activities early in the day will help to regulate a healthy and more normal sleep pattern. This will cause overall benefit to a tired brain. Hallucinations and delusions are more difficult, and sometimes distraction therapies or ‘playing along’ to less concerning beliefs may be kinder. It is important to consider infection as a cause of acute change, especially urinary, so look for signs and raise concerns. Your GP may ask for blood tests.

Wandering can be dangerous and simple measures often suffice. The use of an alarm system at the door, ID badge, informing neighbours and local shops (with permission if possible) and a tracking necklace are all very easy. Locking doors may also help. Keep dangerous items locked away, such as bleaches and machinery, as often danger is not as easily recognised.

Love and sexuality are also complex, and often people may no longer feel comfortable making love with their spouse. This is natural, and you can encourage other methods of displaying affection. This could involve activities as simple as recreational pursuits. Encouraging social interaction may also improve quality of life.

Financial issues are also worth considering. People with dementia are susceptible to fraud, and overspending. By watching out for these signs, and perhaps agreeing to a budget, you can help to mitigate against these risks. In later time a power of attorney may be of use, to help better control spending and prioritise funds for basic care.

Encouraging inclusion in daily activities such as dressing, washing, cooking, travel and recreation is paramount to maintaining a quality of life. Helping your loved one, using step-by-step principles and providing simple tasks under supervision will ensure a worthwhile but safe promotion of their independence. Never let your loved one wash or cook alone if concerned. Regularly review your loved one’s fridge for off food to prevent illness, and check for hiding places when you visit.

Managing the side effects of medication is best done after discussion with a doctor. Although constipation and diarrhoea are common, without a proper history of symptoms you cannot rule out other disease.  Often simple medications and setting up a regular schedule for toileting can be life-changing.

End of life

As previously discussed, Alzheimer’s is a fatal disease. Death usually comes from infection overwhelming a tired and impaired body. As the latter symptoms begin to arise, such as reduced appetite, it will be helpful to begin thinking about end of life plans. This may be very difficult and emotionally challenging, but you are not alone in it and there are many services available. Your local GP can help provide advanced plans regarding hospital admissions and treatments, but these are discussions to have with your loved one early.

Subjects to discuss could include whether they wish to be admitted to hospital, undergo CPR and where they wish to live out their final days. You may have to consider assisted living, either in a care home or monitored community, or the new concept ‘Dementia Village’.  These are hard conversations, but I will guarantee you that these are not decisions to be made too late. Much suffering can be avoided by addressing these issues early. Doctors are very good at managing the symptoms and fears around death, and can provide guidance and medications to relieve worry and pain.